Cynthia Carpenter - 12/28/00 20:06:49
My Email:TooDLightfull@aol.com
Do you or a family member suffer from CVS?: unsure at this point
How did you find the 'Disease in Disguise' page?: Keyword vomit (out of desperation)

Comments:
Hello. I am a 26 year old wife and mom and in the past 4 months I have suffered from bouts of vomiting for no apparent reason. I have had a million tests done and there is no reason.I appreciate the info you have given and I am going to talk to my doc about CVS.While I am an adult the episodes sound so similar. Maybe it will add some insight into my medical mystery.I just wish to have my life back.I can't even go out shopping for groceries without the fear of vomiting in front of people.Thank you for your site and may you have have better health in the future!

James B. McCusker - 12/22/00 14:20:45
My Email:jbm7655@AOL.com
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: Similar to EB's case

Comments:
We have just spent the last week and a half in the hospital with Elizabeth(EB),11 years old. This is the 4th unexplained circumstance within the last 16 months of unexplained constant vomiting. Each episode has gotten longer and longer, this time 6 days, reviously 3 then 4 days. Our doctors have looked at the liver, pancreas, Gastro, Neurologic, etc with each test coming back negative. We are at our wits end. EB was finally released from the hospital on Sat nite only to start vomiting again as she step ou of the car. She has since stabilized, but we still have here on alot of medication to prevent the vomiting. We are on our way today to a Pediatric Psychiatrist looking for answer anywhere. Please E-mail any help you have learned from your experience, My wife & I have appreciate this page. Jim McCusker

Shannah Bickford - 12/20/00 11:20:26
My Email:Bicker74@aol.com
Do you or a family member suffer from CVS?: No
How did you find the 'Disease in Disguise' page?: Looked up Nausea

Comments:
I've been nausead off & on the last couple of days and wanted to see if mabye I could find something about on the net. I have Hiatis Hernia and acid reflux and am on PANTALOC 40mg daily. No other meds have worked until now. Although I don't have CVS my heart goes out to families who have a loved one going through long & worrysome days,Doctor appointments and especially the people who are actually living this awful "nightmare".

- 11/26/00 04:05:45

Comments:
I really enjoyed reading your column about your son. I am so sorry to hear what he and your family have gone through over the years. I have a close neighbor which has this disease too. She is only 6 years old. I just wanted to find out more about this and how one can beat it! Sincerely and caring, Lisa

Mary - 11/13/00 01:45:21
Do you or a family member suffer from CVS?: yes

Comments:
My son was diagnosed with CVS 1 week ago and I was just checking out all of these web sites, to read as much as I could.

Beverley Chapman - 11/11/00 05:52:32
My URL:http://www.aol.com
My Email:bkc56@aol.com
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: key word

Comments:
I am 43 years old and I have had cvs for 25 years. I was finally diagnosed at the mayo clinic. I have many thigs to offer if you would like to E-mail me.thanks beverley chapman

Beverley Chapman - 11/11/00 05:52:31
My URL:http://www.aol.com
My Email:bkc56@aol.com
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: key word

Comments:
I am 43 years old and I have had cvs for 25 years. I was finally diagnosed at the mayo clinic. I have many thigs to offer if you would like to E-mail me.thanks beverley chapman

Beverley Chapman - 11/11/00 05:52:30
My URL:http://www.aol.com
My Email:bkc56@aol.com
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: key word

Comments:
I am 43 years old and I have had cvs for 25 years. I was finally diagnosed at the mayo clinic. I have many thigs to offer if you would like to E-mail me.thanks beverley chapman

Beverley Chapman - 11/11/00 05:52:26
My URL:http://www.aol.com
My Email:bkc56@aol.com
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: key word

Comments:
I am 43 years old and I have had cvs for 25 years. I was finally diagnosed at the mayo clinic. I have many thigs to offer if you would like to E-mail me.thanks beverley chapman

Beverley Chapman - 11/11/00 05:52:24
My URL:http://www.aol.com
My Email:bkc56@aol.com
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: key word

Comments:
I am 43 years old and I have had cvs for 25 years. I was finally diagnosed at the mayo clinic. I have many thigs to offer if you would like to E-mail me.thanks beverley chapman

janet stein - 11/08/00 11:59:45
My Email:antj2@aol.com
Do you or a family member suffer from CVS?: yes my 23 year old son
How did you find the 'Disease in Disguise' page?: chronic vomiting

Comments:
Yesterday I received an e-mail and mistakenly deleted it thinking it was something else. Please if you e-mailed me send it again as I'm very interested in what you have to say. I'm as baffled as everyone else and am afraid my son will do permenant damag to his esophagus or somehing else. Thank you. Janet

Janet - 11/05/00 14:23:37
My Email:antj2@aol.com
Do you or a family member suffer from CVS?: my son luke
How did you find the 'Disease in Disguise' page?: chronic vomiting

Comments:
My 23 year old son Luke has these same bouts of violent unrelenting vomiting that lasts for 4 or 5 days and even longer in some cases if he can't get the proper medication and hydration. The only medication that seems o help him is a shot of demerol and V in the hospital. There have been times where he has had to go back for another shot of demerol. He can't take any medication by mouth because he can't keep it down and suppositories don't help at all. He is 5'10" and usually weighs between 140-145. e lived in Caliornia for three years and had to come back to New York because he was so sick. We thought that stress caused the problem. He was 115 when he got here. For six months he was fine and we thought the problem was solved but he started again ast Monday. It is so frightening to see anyone that sick especially your own child. I have read in this page that this "disease" can occur in families that have a history of migraine headaches. I have them and so did my maternal grandmother. My son is scheduled to have tests done on motivity. Has anyone heard of or experienced this test? Also, I would like to know if anyone has or has heard of pyloric muscle spasm? My son was born with this and he projectile vomited every feeding. After vomiting t e muscle would relax and he would hold the second feeding. [I was nursing him] As he got a little older and was on formula he would vomit only sometimes. He kept this up for his first 18 months. Then it lessened; but nasty smells would upset his sto ach and he would get sick. At this point he just had a sensitive stomach. During his school years through high school he would come home it seemed like once a week with stomach upset but not get sick. Then the vomiting started again when he went to Cal fornia three and a half years ago. The doctors in Cal. said it was caused by stress. They seemed stumped. I am hoping to find out more with this motivity testing. Please, if anyone has had this test pleas contact me. And if anyone has a pyloric muscle spasm problem let me know. This is different that pyloric stenosis. That is operable. The spasm is not. Sorry for writing so much but maybe someone else has the same problem. Thanks.

Cindy Watkins - 11/04/00 05:57:21
My Email:Cwatkins2@aol.com
Do you or a family member suffer from CVS?: yes, my 11-yr old daughter
How did you find the 'Disease in Disguise' page?: from a friend

Comments:
I would love to talk to someone about this. I'm at a loss and I the doctors are finding nothing. I read through everything in the 11-page CVS home page and what I've read sounds exactly what my daughter is going through. I would love to hear from you.< r>
Tim Norman - 10/26/00 15:16:17
My Email:fax 503-258-1425
Do you or a family member suffer from CVS?: Yes my son scott
How did you find the 'Disease in Disguise' page?: random search

Comments:
We live in Portland Oregon.Scott has had about 12 hospitalizations in the last 2 years.So far the doctors at Dornbechers childrens hospital have done nothing more than put him to sleep with drugs when he is sick and keep him hooked to an I.v. of course.Th y simply comfort him untill it passes.Scott is on some medications for other problems.Tegratol,anatriptaline,chlonodine.Do you know of any links to his condition with these?.

Tammy - 10/24/00 16:03:33
My Email:monsters5@email.com
Do you or a family member suffer from CVS?: my 5 year old daughter
How did you find the 'Disease in Disguise' page?: search engines

Comments:
While reading Jeremy's story I recognized my daughter. Since she's been tiny shes been vomiting in episodes, shes been hospitalized for dehydration, and no one ever knew why. I was always sent home being told she has a virus (every two months). We fina ly found a doctor this week who diagnosed her with CVS. I feel relieved that we finally know what is wrong. She was also diagnosed with Juvenile Arthrits last year. Its nice to know that people out there know what i go through, watching her vomit until there's nothing left, Holding her while she cries no tears....thank you for you web page.

Peggy Hansen - 10/23/00 15:17:06
My Email:Fathead64@hotmail.com
Do you or a family member suffer from CVS?: Not diagnoised yet
How did you find the 'Disease in Disguise' page?: Search

Comments:
My child has these symptoms but not as severe yet. I am at my wits end. I am tired of people (health care and otherwise) that she is tring to control me! Tomorrow I have hope of help from a child phycholigist who over heard me at work and told me he would almost bet she has abdominal migrains or cyclic vommiting. From everything I"ve read it matches. I am emtionaly wiped out! Thanks for posting info and sharing your story. Peggy

susan collins - 10/19/00 08:16:55
My Email:iseeiseeisee@aol.com
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: search

Comments:


Kezia Pride - 10/19/00 03:29:13
My Email:Kezia@dellnet.com
Do you or a family member suffer from CVS?: my 5-yr-old son
How did you find the 'Disease in Disguise' page?: Internet search

Comments:
Hello! Thank you for sharing your family's story. My five-yr-old son has always had what we thought was "an unusual susceptibility to stomach flu." He had his first vomiting episode at age 9 mos, and has had "stomach flu" with repeated vomiting two or thr e times a year since then. In the last year and a half, he has been to the ER three times for dehydration. I could never figure out why, once he started vomiting, he couldn't stop. Well, the last time (two days ago!) the ER doc suggested the possibility o CVS, which I had never heard of before. I and also my father are migraine sufferers, so the concept of "abdominal migraine" makes sense to me. I was particularly intrigued by your mention of someone on your CVS list having a positive experience with accupressure. I am whollistically inclined and not too thrilled with the Phenergan Rx we were given to stop vomiting episodes before they get to the dehydration stage (which my son reaches within about four hours!). I realize that entry was written a long time ago, but I'm wondering whether you still have that family's e-mail address. I would so love to talk to someone who could possibly direct me to source for finding more about accupressure for CVS. Thank you for your time, and thanks again for sharing your story. I sincerely hope Jeremy is doing better!!! Kezia Pride, Kezia@dellnet.com

Sharon Locke - 10/12/00 04:38:04
My Email:SharonLocke2132@aol.com
Do you or a family member suffer from CVS?: stepdaughter
How did you find the 'Disease in Disguise' page?: iwon.com lead me here

Comments:
i am hoping that you can help us or lead us to someone who can. I am getting married on 11/11/2000 and this is causing such a strain on my relationship w/future husband. 6 y/o mentally retarded daughter (mental capacity supposedly 14-18 month level) start d almost a year ago with vomiting. been to all major hospitals in Ft Lauderdale/miami area. No one can tell us why she is doing this, because they have not diagnosed her. This is now what my husband believes, along with a neurologist, that she has. Whe e is the best medical center for this? what drugs to treat? please help if you can, we do not know where to turn.

Shauna - 10/10/00 03:08:53
My Email:Shlepy16@hotmail.com
Do you or a family member suffer from CVS?: i suffer from it
How did you find the 'Disease in Disguise' page?: my mom found it

Comments:
hey jeremy. i totally feel your pain. i've had it since i was four years old. it really sucks. i was just diagnosed about a year ago. im 17 years old and live in california. i know how it is to go through with all that. i miss school a lot for it and i re lly dont like missing school. its really hard now that im older. im a very active person like you are. im involved in sports and im alwayz out with friends. if you wanna email me, go ahead. shlepy16@hotmail.com

Linda Howard - 10/05/00 19:43:11
My Email:dar997@aol.com
Do you or a family member suffer from CVS?: daughter
How did you find the 'Disease in Disguise' page?: was very hard to find. kept looking

Comments:
my daughter has not been diagnosed and the doctors don't have a clue. she has many of the symtoms listed but the doctors don't listen to me. what should i do?

Sara - 10/05/00 15:23:55
My Email:sara_h_1974@hotmail.com
Do you or a family member suffer from CVS?: I dont know
How did you find the 'Disease in Disguise' page?: surfing

Comments:
My daughter is 2 1/2 years old ever since she was born She would go through vomiting spells. First the doctors thought it was the formula. But after she got off the formula she still does it vomits really bad at night especially. The doctors have no ide what is going on either. It usually last a few days goes away for a few weeks to months and comes back again. I am beginning to get frustrated because i dont know what else to do. I cry because I cant help her. When she was first born she had trouble digesting formula she would have severe diarreah. But that went away in time. But the vomiting is ongoing. It started again last night. so sometime within the next 3-5 days it will sto and she will be fine for a few weeks to months then it comes again. She can be sound asleep and it just comes out. I Am so glad i found this. I will pass this info to the doctor and see what they think. Thanks again

Tracy - 10/04/00 23:42:41
My Email:thetish@hotmail.com
Do you or a family member suffer from CVS?: yes..my 9 year old daughter
How did you find the 'Disease in Disguise' page?: searching under cyclic vomiting

Comments:
I just got home today from yet another hospital stay with my daughter..your page and information has helped to calm me down a great deal and not feel so alone. From age 2 thru 5 I went thru these vomiting episodes..at age 5 they decided she had malrotatio (intestine) from birth and she had surgery. For 3 years she seemed to be ok..the vomiting was minimal..now since December of 1999 it's been monthly. So at this point they diagnosed her with CVS. Thank you for listening.

Barbara Melendez - 10/04/00 22:01:45
My Email:pitosgrandma@yahoo.com
Do you or a family member suffer from CVS?: maybe
How did you find the 'Disease in Disguise' page?: surfing the web

Comments:
My grandson has been having vomiting episodes for about 4 months. He has been hospitalized 3 times. The doctors have tested him for just about everything. They seem to think that he has CVS.

Rachel - 09/15/00 06:06:27
My Email:hillslandscape@aol
How did you find the 'Disease in Disguise' page?: I typed in the word nause!

Comments:
Hi, My name is Rachel and I am 22 years old. It is 1:19 a.m. and I am despertaley seeking some help. I woke up about an hour ago, sat straight up in the bed, ran to the bathroom and luckily I haven't thrown up yet. I am trying my best to fight this tonight. I have a long story and I would like fo someone to listen. I truely think after being seen by so many doctors and still not having any diagnosis, my family is getting fet up with my situation too. I can remember when I was younger getting up in the middle of the night or early in the morning and vomiting. It was only about twice a year. My mom would get up with me and tell me to calm down and everything would be alright. She would get me a cold washcloth and rub my head with it. After a while we would finally fall asleep on the couch. This only happened about two or three times a year. About five years ago things changed. I got pregnant at age 16. I had to have a c-section,(my son was breech) but other than that a normal pregnancy. Shortly after his birth I started getting sick. His first year only still about four times. His seco d year it was about every three months going to the ER about twice that year. His third year it was about the same, ending up in the ER about three times. His fourth year about the same. But, in the last year and a half I have woken up either late at n ght or early morning, usually out of sound sleep, sat up sometimes warm or maybe sweaty and went straight to the bathroom and began vomiting. It is usually accompanied by terrible chills, body achiness, extreme nausea, dry heaves, and usually always a lo se bowel movement or diarrhea. In 1998 the episodes seem to come more in the day time, and were first set off by a terrible headache and dizzy spell. Then came the nause, chills, diarrhea and so on. In 1999 I became pregnant with my daughter, she was a repeat c-section. I am not sure if surgery may have some kind of connection. For the past year these episodes have came on a three to four week interval. The nausea gets so bad I have to go to the ER. I have probably been at least 10 times this year. I am almost embarrsed to go because I am afraid they are getting tired of seei g me. Luckily the actual vomiting has decresed. It is mainly the nausea that I can not handle. I to have had all the test -upper gi's -cat scans -ultrasounds -blood samples Some possible theories I have received have been -hormone imbalance -irritable bowel -and one ER doc said he thinks it could almost be the actual day I am ovulating -birth control pills Nothing has ever been tested, proven or actually diagnosed. The reason why I am writing tonight is because it has only been five days since my last ER visit and I woke up sick again tonight. The ER doctor aways gives me phenagan and depending on if I need it fluids. Usually it works and after about an hour I go to sleep when I wake up usually late that afternoon or evening I feel almost fine, other than being drowsy from the medicine. My mom does suffer from seveare migraines. She also has thyroid disease. I am not sure if this is related. I guess you would say with phenagan I have about a 12 to 24 hr. episode. They are starting to become more and more frequent. Nausea does not seem like such a bad thing but it is unimaginable. I am sure I am forgetting some important details. I actually have made it through this episode tonight(I Hope)though. Please anyone who would like to contact me feel free to. I would like to keep you posted on my situation and learn more about this disease. I understand what you are going through and I have been crying the whole time I have been typing tonight, but lik I said I have almost made it through it, it is a terrible pain to have to suffer. I will pray for all of us. Thank You Rachel

Alpha - 09/14/00 01:45:56
My Email:starrynightabh@aol.com
Do you or a family member suffer from CVS?: i'm not sure
How did you find the 'Disease in Disguise' page?: search engine

Comments:
my name is alpha and i'm a senior in high school. during my junior year i started having severe nausea, sometimes it would end up in vomiting but it wasn't that bad. now, it has gotten worse. at school i vommit a lot, but my symptoms don't seem to be as b d as your sons. i've been to my doctor and they just think its a hormonal imbalance. now my mother thinks its caused by anxiety but by looking at the syptoms, starts in the morning or at night, caused by excitment ect. that's what i'm going through. i've ever had this before(if this is what i have) and i can't stand living like this. my life isn't normal. if you could give me more information on this syndrome or what to do about it, maybe it will give me peace of mind. thank you.

Cathy - 09/12/00 06:30:30
My Email:howszful@aol.com
Do you or a family member suffer from CVS?: maybe
How did you find the 'Disease in Disguise' page?: dogpile.com search engine

Comments:
I don't know what article I was reading, on the internet, that mentioned CVS, but I am grateful. I am trying to find out why my 4 year old daughter keeps having these violent recurring vomiting episodes. The Dr's either don't know, or are too inconvenie ced to care. "The flu is going around" they keep telling me. Well, I have five children under the age of nine, and when the flu comes to my house, everybody gets it. Not just one person, over and over again every 4-6 weeks or so. You have given me the hope of having a possible diagnosis. I will follow up with asking for a referral to see a pediatric gastroenterologist, for my four year old, tomorrow at the "well child check up" for my 21 month old twins.

Sherlon colclough - 09/05/00 03:39:29
My Email:shepeace818@aol.com
Do you or a family member suffer from CVS?: I have been vomitting lately alot for no reason
How did you find the 'Disease in Disguise' page?: i find this page to be very interesting

Comments:
I'm very pleased that I have found your page,now when I go to my doctor they will better understand how I'm felling and whats going on with me.

Angie - 09/03/00 02:45:55
My Email:DLPxtn@AOL.com
Do you or a family member suffer from CVS?: not sure

Comments:
I was looking for some home remedies for my son's vomiting. It has been 7 days this time. He lost 5 pounds over 24 hours. I brought him home from the hospital last night,and tonight he is still doing it.My son is autistic and non verbal, and the only way hat we know he is not feeling well is a change in behavior or he starts vomiting. He did vomit a lot when he was growing up, but it never lasted more than 24 hours. The doctors always said it was some new virus, and there was nothing they could do. It is ard for me to see my son so sick and not be able to help him. This web site has given me some hope, even if it is not what is wrong with my son,maybe some of the same treatments will help him. May I give his doctors a copy of this. If knew about it they m y have forgotten. THANK YOU

Cushela & Tayler - 08/27/00 08:12:47
My Email:whitehead@surf4nix.com
Do you or a family member suffer from CVS?: our son

Comments:
onset at 3 months, diagnosed at 5 years. he vomited for 5 days evey 21 days. improved at 8 1/2 probably six or seven episodes a year. but still has lots of nausea in the mornings. 2 episodes in the last year, one severe. I am a nurse (Cushela) and le t work to care for nick full time. it was very stressful on our relationship, sometimes people thougth we were bad parents. Diagnosis was a relief as well as distressing. Nick is 12 now and starting to find his independence. He also has learning difffi ulties around spelling, and has just repeated a year at school (he missed a lot of school due to vomiting). So glad to see we are not the only ones, its been TOUGH! Love to hear from you. Cushela and Tayler

Sarah Gittins - 08/15/00 19:09:50
My Email:jsgittins@btinternet.com
Do you or a family member suffer from CVS?: friend's daughter
How did you find the 'Disease in Disguise' page?: google search

Comments:
My friend's daughter has recently been diagnosed with CVS. My friend is not certain that this is a correct diagnosis, and we are trying to find out more about it. Your site was useful and I'll be passing on the information.

Mary - 08/14/00 01:40:15
My Email:light@nbn.net
Do you or a family member suffer from CVS?: maybe my son
How did you find the 'Disease in Disguise' page?: searched under vomiting child

Comments:
I never heard of this disease, but it my son has most if not all of the symptoms. He started vomiting at about 2 mo old. My doc said he was lactose intolerant. Soy milk did not help much. Then he developed asthma, of which he has outgrown now. However the bouts of vomiting, and abdominal pain happen randomly and usually always start early in the am. This morning it was at 4:30am. These episodes happen sometimes a couple of months apart, sometimes even 4 to 6 mos apart and usually last about 8 to 10 ho rs. However recently they have been lasting 2 days, which I feel so helpless. He has the dry heaves, with spitting. He gets very thristy and I let him have small sips but usually comes back up within minutes. I am so releaved to find that maybe there is something other than "just his body's reaction to stomach virus", which is what 2 doctors have told me. Thank you for your information.

Barb McClung - 08/11/00 14:31:28
My Email:barbara.mcclung@jnli.com
Do you or a family member suffer from CVS?: Yes, I believe so
How did you find the 'Disease in Disguise' page?: I searched under 'vomiting'

Comments:
I am so relieved to find this information! My daughter is 10yr old and has an unexplained illness that is getting more and more frequent. She began getting sick in approx the 1st grade, I associated it to stress now that she was in school and all. It h s changed forms over time but right now it usually begins with a headache (migraine type as my mother and two sister suffer from them) and then the stomach ache comes. The vomitting doesn't usually begin until night or early morning, I have never noticed it started in mid-day. This year alone she has had approx 6 episodes. I held back from taking her to the Dr. as I wasn't confident they would find anything as I could see no pattern that causes the onset. Finally this summer after 3 episodes in a row ( ll started late Friday night and lasted approx 10-15 hours) we decided to take her in. The Dr. went with a reflux diagnosis and suggested Mylanta at meal time everyday and then a re-check in two weeks. If that didn't work, he also gave me a perscription for Tagament to try. We never took her for the re-check and never gave her the med as I was confident that wasn't it. She has been fine for the last two months until last night where she had another attack. I say attack cause that's what it seems like. She is so small already that I can't bare to see her having the dry heaves for so long. As I read your page I was more and more reassured that I had found a more realistic answer than the 'refulx' diagnosis the Dr. made. When I read about the spitting t was too ironic, as I had noticed that after the intial two actual vomits, the reminder of the day was mostly dry heaves & spitting. I thank you so much as now I can go back to the Dr and provide this information in order to more accuratley treat her. , of course, would like them to rule out certain things first such as migraines (they can sometimes cause vomitting) as well as stomach ulcers as she does worry alot. Once again, It was a relief to find your site and know that we aren't the only one in t is type of situation or at least in a similar one. Thanks,

Lisa - 08/08/00 23:20:54
My Email:LCrosmer@aol.com
Do you or a family member suffer from CVS?: My Son Blake
How did you find the 'Disease in Disguise' page?: AOL search

Comments:
I am so glad I found this page, my son is 10 and for that long he has has this problem and it was just diagnosed yesterday! I am glad to know now that it really is something other than a virus every 3 or 4 months!

Eilis Phillips - 08/06/00 18:49:07
My Email:eilisphillips@hotmail.com
Do you or a family member suffer from CVS?: 3 year old cousin in Dublin, Ireland
How did you find the 'Disease in Disguise' page?: web search

Comments:
Within the last month my cousin in Ireland was diagnosed with CVS. She has shown symptoms since she was a baby. She has visited a number of doctors to find out what was wrong. She will lie in bed for up to 10 days at a time a number of times per year. Around holidays her symptoms show up. She is very small for her age and can't seem to put any weight on. My mother is visiting them now and asked me to find out about CVS because the parents of the child know little about the disease. Your site was inf rmative and the symptoms sound just like what I have been told about my cousin. I'm going to now look at the CVS homepage for more information. Thank you for sharing your story and for the helpful information. Sincerely, Eilis Phillips Kensington, Maryland

Jessica Austin - 08/05/00 11:23:21
My Email:andy.robinson1@btinternet.com
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: net

Comments:
I was once a sufferer of CVS from the age of 2-11 I am now 23 and haven't had an 'attack' for 12 years, however I will never forget the 'sick years' and even now when I'm sick still pray that it will stop after the first dash to the loo. I was diagnosed at the age of 9 after no-one being able to help or nowing why this was happening and years of I.V treatment, suppositries, blood tests and regular hospitalisation. The specialist I saw in England who diagnosed me said his theory was that once sick most people would receive a message from the brain to stop but there was interference with this signal being sent to my stomach. From the age of 9 every time I was sick I would sit in the feotus position and tell myself "stop being sick, stop being sick". The bouts lessened and 2 years later I had my last CVS att ck. The only time it has returned since was when I became pregnant 3 years ago. I started suffering from morning sickness and after 6 days was admitted to hospital for I.V treatment. The pregnancy triggered off my CVS and this combined with the fact that very dose of fluid or nourishment that I got was taken by the baby I was vommiting every 10-20 minutes for 9 days before it finally stopped. And when the pregnancy was over so was the CVS and now hopefully for good. Please contact me if you want any information or support. Jessica, England

Patricia Dickman - 08/02/00 17:08:02
My Email:lrpad@cs.com
Do you or a family member suffer from CVS?: I do
How did you find the 'Disease in Disguise' page?: very informative

Comments:


- 07/23/00 23:02:00
My Email:pepperpdzmyswrit@aol.com
Do you or a family member suffer from CVS?: brother in law

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Thank you for the info. This individual has been seen professionally several times with no apparent significant diagnosis or cure. This info is helpful in just knowing it exists. Thanks. pepper

cindy - 07/23/00 21:13:35
My Email:cmphilip15@aol.com
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: online

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Robin - 07/23/00 02:09:54
My Email:rlb112269@yahoo.com
Do you or a family member suffer from CVS?: not sure...maybe
How did you find the 'Disease in Disguise' page?: searched "vomiting in children"

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My 18 month old has been having similar symptoms since about 9 months old. Her symptoms do not seem as severe, but she does take these "spells" where she vomits about once or twice a day for about 4 to 6 days. It mostly ocurrs at night. She may go 4 to 6 weeks before having another episode. The vomiting comes and goes so suddenly. It seems like she has the symptoms of CVS, except she does not vomit constantly---usually once or twice a day each occurrance. I wonder if she could still have CVS--are there different levels of severit ? Her doctor wanted to treat her for acid reflux (without testing for it) but I did not feel comfortable having her on medication daily for something I wasn't sure she had. Especially since she is very healthy in between episodes. Her problem seems to m to be worse than acid reflux, but maybe not as severe as CVS. We are going for an upper gi test next week. Hopefully we will find out something.

Chuck Hager - 07/15/00 22:17:19
My Email:Chuckhag@aol.com
Do you or a family member suffer from CVS?: not sure

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For the past four years I have had bouts of vomiting/retching that last until I am eventually hospitalized for 4-7 days and given only IV fluids. It goes away and usually won't happen again for 12-16 months except in 2000 I have been hospilized in March a d June/July for a week each. Been through several test most negative. Does this sound like CVS? How can I tell. Chuck

Catherine - 06/30/00 21:46:40
My Email:MEWL295622@aol.com
Do you or a family member suffer from CVS?: My aunt had it, I had and my brothers had it and my child has it. My mother also suffers from migraines.
How did you find the 'Disease in Disguise' page?: Just during a search.

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I find this information fascinating. Luckily our bouts are of a short duration but both my and my child's occur after a bad night of sleep (possibly due to excitement)My MD suggested that we had low blood sugar but this really seems unrelated to the amoun of food we eat the night before. Is this illness hereditary?

Regina - 06/21/00 14:19:40
My Email:wrsmwhite@aol.com
Do you or a family member suffer from CVS?: believe so
How did you find the 'Disease in Disguise' page?: looked up cyclic vomiting

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My 4 year old daughter has been vomiting since the age of 15 months (Dec. 96). It started along with a high fever and the flu. It continued for 4 months(Mar 97). Then stopped for 3 months. For the past 3 years it has pretty much been an everyday episo e. After the 3 month break, the vomiting started up and with 5 or 6 episodes a day, every day. Now she is on periactin and is on a cycle about every 2 weeks of "normal" and 6 hours of vomiting. She hasn't been "diagnoses" with cvs yet, but the gi reall had no other tests to run and was just trying this as a last measure before he sent us to a surgeon. what they were going to operate on I don't know. He just happened to mention cyclic vomiting in passing one day and so when I got access to the internet I looked it up. thank you so much for all of the information. I will definitely be questioning my doctor about several things. Fortuneately our dr. is very understanding and willing to take the time to answer any questions I may have. My prayers g out to all of you

Alex's mom - 06/21/00 03:01:05
My Email:mascitti@msn.com
Do you or a family member suffer from CVS?: yes - son age 4

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It's me again-- I went on to read responses from other guests to your website and thought I would share more of our story. Alex had his first episode at six weeks old. At the time I was nursing and thought maybe I had eaten something to upset his stomac . Looking back now, I recognize his symptoms from that day as cyclic vomiting. He only vomited once that time but he was extremely lethargic, very ghostly white, his eyes always roll back into his head while he is vomiting, even then. He was awake when he started. I was holding him in my arms and he was facing me. I was wearing a dress with a small checked pattern. Now I believe that he was trying to focus on the checked pattern and that is what lead to his vomiting. Since then, he usually vomits eve y four months. He had an episode while playing in a "johnny-jump-up" and was bouncing around in circles. He had an episode while playing on a piece of fabric with a burgandy and white striped design. He was looking at the stripes when he began vomiting. He had an episode after rough-housing with his sister. He had an episode when he was running in circles around our couch laughing and playing "you can't catch me". His latest episode was June 12 when he and his sister, who is 12, were playing in the pool She was holding him and they had been jumping up and down making waves. The water was still wavy when he was swimming across the pool trying to get on a raft. He suddenly had a strange look on his face, swam to the ladder, climbed out screaming, hittin himself on top of the head with his head and saying he was dizzy. He immediately began to vomit. Then went to sleep. His episodes usually last approximately 7 hours. This last episode lasted 13 hours. It had been 15 months since his last episode in M rch of 1999. We thought he had outgrown this. He always complains of dizziness and puts his hands over his eyes (he did this even when he wasn't able to speak). He says he has a headache. He is always playing normally and within 1 minute goes from dizz ness, vomiting to asleep. He stays asleep throughout the entire episode semi-waking about every 15 - 25 minutes only long enough to vomit or retch, then immediately goes back to sleep. He definitely fits the "concious coma" description. He usually vomi s about 25 times. We keep Phenergan suppositories on hand (12.5 mg suppositories) and try to give him one 12.5 mg suppository as soon as it starts but it never stops the vomiting. The nurses or doctors always make us wait six hours before giving him the second dose of Phenergan. It usually ends about an hour later. We had been given instructions to take him to the ER if he had another episode (This was in March of 99 when the GI doctor diagnosed it as cyclic vomiting). She had given us orders for an upp r GI, blood tests, abdominal ultrasound and abdominal x-ray. We had these tests done and all were normal including a CT scan of his brain. His blood was also checked for organic acids. All normal. Upon bringing him to the ER - his episode started at 7: 0 p.m. on June 12 (our Phenergan had expired so we did not give it to him). We arrived at ER at 10:00. At 1:00 a.m. they started IV's and gave him Benadryl and Phenergan. He had been vomiting every 15 minutes since 7:30 but after the Phenergan and Bena ryl (they thought he had a migraine even though I told them he had cyclic vomiting - of course the ER doctor had never heard of this - and this was Scottish Rite Children's Hospital - this was why they gave him Benadryl). The vomiting did slow down to ev ry 1 & 1/2 hours until 6:00 a.m. the next morning. Then he vomited at 6:00 a.m., 7:00 a.m., 7:40 a.m. and the nurse gave him a second dose of Phenergan at 8:00 a.m. At 8:15 a.m. he opened his eyes, began to talk, drank some gatorade and was completely b ck to normal. His episodes always end dramatically in this way as if nothing had ever happened. He hasn't vomited since. He has had eczema since he was a small infant. Ironically, during the 15 month period without an episode, his eczema has disappear d almost completely and he developed asthma in the fall and has had a cold almost constantly throughout the fall, winter and early spring. Colds usually last 3 or 4 weeks but have never caused an episode of vomiting. He did have a "real" virus in the wi ter with vomiting and his behavior was nothing like with cyclic vomiting. He remained concious and ran a fever (something he has never done with cyclic vomiting). He has never had diarrhea. Interestingly, he has not needed a breathing treatment in the l st three weeks until last night. Normally he wakes up sometime in the middle of the night almost every night needing a treatment. Usually the vomiting is preceeded by a high pitch scream. Although I do think this was a little better after he had received the Benadryl in the hospital. Benadryl is used to treat migraines in children. He has never complained of a stomachache or even held his stomach as if it hurts. He also grinds his teeth terribly as he is just beginning to feel the need to vomit. trangely, he can do any of the things that seem to have lead to vomiting at other times and nothing has happened. He can look at books in the car and does not get car sickness. Family history: My mother suffers from migraines, sinus infections and moti nsickness; I have one sister who suffers from migraines with auras, asthma and various allergies; I have one sister who suffers with motionsickness, sinus headaches and frequent sinus infections. My father suffers with frequent sinus headaches and sinus i fections. My husband's father suffers with motionsickness and my husband's mother and brother suffer with terrible migraines. My daughter has frequent mild headaches but she is from my previous marriage. He has had episodes that did not seem to be trigg red by any type of dizziness although one one occasion of this it was my daughter's birthday in November 1999 and we were getting ready for her party. One thought I have had: He has taken so much Benadryl and cough medicines with ingredients for runny no es during the past 15 months that I wonder if this could have suppressed his vomiting. I would like to know the statistics of children who have grown out this in a short period of time compared to those who have suffered from a young age to the end of te nage years into 20's. Any info would be greatly appreciated. Sorry for taking up so much room but I thought his case was a little unique in that he has never awakened from sleep to have vomiting episodes. Everything else fits to a tee!

Alex's mom - 06/21/00 01:31:07
My Email:mascitti@msn.com
Do you or a family member suffer from CVS?: yes - my son
How did you find the 'Disease in Disguise' page?: did search on cyclic vomiting syndrome

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Reading the CVSA Facts was like reading a story about my child. It was a tremendous relief to be able to say "yes - that is exactly what he does!" and to know that somewhere there is someone else with this dreadful illness - so far I have yet to ever meet anyone who has ever heard of this or experienced these episodes! Thanks! Alex's mom

- 06/20/00 21:46:05

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- 06/20/00 01:48:48
My Email:eeyore3369@earthlink.net
Do you or a family member suffer from CVS?: hope not!?!?!?!?!?

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thank you very much. i don't need to tell any of you how worried you get when you child vomits for no apparent reason. she hasn't been diagnosed with it.(cvs) but it's nice to at least find info and a place to turn. thanks

missy - 06/15/00 20:11:54
My Email:sc1for24
Do you or a family member suffer from CVS?: ? she is being tested, tomorrow cat scan and ultrasound?
How did you find the 'Disease in Disguise' page?: trying to find out why baby is vomiting

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hi, my little girl began vomiting at 1 1/2 years old. she will be two at the end of the month. her doctor said she had baby migranes. i didn't buy this, so i kept calling and bringing her in. finally after 6 months, i called again in tears. this time i wa refered to a specialist. the specialist has ordered blood tests, a cat scan, an ultrasound, and a g.i. series test. i am scared to death. my fears are tumors, or cancer. i'm being told no, and that she probably has celiac disease, a blockage, or cycli vomiting. i had never heard of this disorder before, and she does have some of the symptoms. other than the vomiting spells every two - 4 weeks, she is a beautiful little girl who shows no signs of sickness. thank you for sharing your story. and god bless. missy

laura bennie - 06/12/00 23:17:56
My Email:bbennie@home.com
Do you or a family member suffer from CVS?: maybe

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I don't know who to turn to anymore. I have been to the doctors with my son, I have had a burium series done. And they tell me ther is nothing medically wrong.My problem is not as severe as the case i read, but my son vomits at least once per day. Sometim s more. I am at a loss, I would like to hear from someone. or sent any suggestions. Signed A Mother who is lost

Debbie Fenton - 06/08/00 03:49:50
My Email:patcodeb@aol.com
Do you or a family member suffer from CVS?: Daniel-my son-4 years
How did you find the 'Disease in Disguise' page?: pediatric vomiting keywords

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I cried when I read about Jeremy. Each time Daniel gets these attacks, which are every 2 months, I'm afraid something terrible might happen. He vomits so hard he can't breathe for a few minutes. He's had mri, cat scan, eeg, bloodwork, etc. I too have eriodic migraines, as does my sister. My whole family will be excited when they find out about your web page. We've all been so worried. I have a great doctor, and will also tell him about this. Thank you so much! Debbie & Daniel ps - He's had this s nce around 6 months old

joe sosa - 05/29/00 14:22:16
My Email:sosajs@aol
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: surfing the net

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i cant imagine a child going through this disease as an adult (43) i have been going through these same symtoms for the past 4 to 5 years. it is the most overwhelming feeling i have ever experienced feel so helpless . ive got it down to about a 12 hrs of vomiting with about 36 hrs of recouperating. t seems that the only time im in control is when im vomiting sounds gross but very true. i too feel that stress is a factor but not all of it. ask jeremy if he feels that he always feels that he has to go to the bathroom. most of my episods start in the morrning after a bowel movement. with always the feeling of not being finished, completeing the act.. ha ha other than a metalic taste in my mouth theres nothing else i can add. what ever it is thats wrong needs to be s opped keep hoping and praying el guapo

Maila - 05/23/00 01:53:53
My Email:babtst
Do you or a family member suffer from CVS?: YES
How did you find the 'Disease in Disguise' page?: INTERNET SEARCH

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My daughter was diagnosed with CVS 2 1/2 years ago although she has been sick for about 5 years. I'm so frustrated with the lack of information and treatment available. Our Dr. said there are a few things we can try but really you just have to wait it o t--but she doesn't have to watch my child suffer through every episode. She is 8 years old and the past year she seemed to be improving but with this last episode lasting 4 days and counting I'm not so sure. Is there anything available to help these poo children?

Peteulah Charles - 05/21/00 17:19:35
My Email:crazygirl24@hotmail.com
Do you or a family member suffer from CVS?: no
How did you find the 'Disease in Disguise' page?: through a biology class we have to reasearch a genetic deasease.

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I'm so sorry for your son Jeremy who is suffering from CVS. It is nice to know that your one of the few mothers who stayed with your son.And didn't leave him to suffer by himself. It's nice to know that you have faith in God. My advice to you is to keep o praying and give God the glory. For letting your son see a next day. It might be dum taking advice from a 15 year old. But I know what you been through. For I have a cousin who is 3yrs and can't walk or talk and can't move her whole left side. It's amazi g how the devil can be so busy to cause so much trouble. But like I said before just put your hand in the Lord. P.S I'll pray for you I promise.

Kim Williams - 05/13/00 12:54:03
My Email:lynwil_72476@yahoo.com
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: search

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My son Seth who turned 5, two weeks ago started having problems in 3-99, after numerous Ped. visits and even Ped. Gastroenterologist, I think the OBGYN I work for and myself have found his diagnosis, his episodes are now on approx.1-2 week intervals, the pec. never gave the diagnosis except of chronic gastritis, and esophageal chalaasia, diagnosed by EGD and colonoscopy, he says on last weeks visit to let him live his life, give him a heating pad, I explained he can't live his life because the episodes la t from 1-5days with the vomiting of anywhere from 15-20 times being worse on first day to slowly getting better over next few days with extreme lethary, fatigue etc. The OBGYN I work for as I am an RN had mentioned this because he had a friend with a chil who had this, only about 3 children in the Jonesboro Ar. area Childrens clinic. He had a horrible episode this week and I took him to regular Pediatrician there and mentioned, he researched his chart and called me back yesterday and suggested starting hi on Amitryptyline 25 mg, which I started last PM, this illness if correctly diagnosed has affected our whole family, as far as we have to base our whole life and activities based on how he feels, I would quit everything to be with him though, and often I ust lay in bed and cry with him, it seems at it worst as though your baby could just die right in front of you they are in such pain and misery, but a few days later you have your healthy normal child back, this is so frustating, but it will just be good o have even just a diagnosis, I feel maybe we have found it. He always runs a temp. after the vomiting begins. Thank you for listening. Kim

Kim Williams - 05/13/00 12:52:40
My Email:lynwil_72476@yahoo.com
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: search

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My son Seth who turned 5, two weeks ago started having problems in 3-99, after numerous Ped. visits and even Ped. Gastroenterologist, I think the OBGYN I work for and myself have found his diagnosis, his episodes are now on approx.1-2 week intervals, the pec. never gave the diagnosis except of chronic gastritis, and esophageal chalaasia, diagnosed by EGD and colonoscopy, he says on last weeks visit to let him live his life, give him a heating pad, I explained he can't live his life because the episodes la t from 1-5days with the vomiting of anywhere from 15-20 times being worse on first day to slowly getting better over next few days with extreme lethary, fatigue etc. The OBGYN I work for as I am an RN had mentioned this because he had a friend with a chil who had this, only about 3 children in the Jonesboro Ar. area Childrens clinic. He had a horrible episode this week and I took him to regular Pediatrician there and mentioned, he researched his chart and called me back yesterday and suggested starting hi on Amitryptyline 25 mg, which I started last PM, this illness if correctly diagnosed has affected our whole family, as far as we have to base our whole life and activities based on how he feels, I would quit everything to be with him though, and often I ust lay in bed and cry with him, it seems at it worst as though your baby could just die right in front of you they are in such pain and misery, but a few days later you have your healthy normal child back, this is so frustating, but it will just be good o have even just a diagnosis, I feel maybe we have found it. He always runs a temp. after the vomiting begins. Thank you for listening. Kim

Griffin Brooks - 05/11/00 20:58:14
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: at Mayo Clinic Library

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We are so excited to finally know why our son has suffered so horribly for the past 4 1/2 years. We finally solved the mystery today at Mayo clinic

James Stroud - 05/11/00 07:56:45
My Email:james.stroud@bondlands.com
Do you or a family member suffer from CVS?: Yes, my son Jack (5)
How did you find the 'Disease in Disguise' page?: via CVS assoc links

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My son is a suspect CVS. He's having his fourth episode (the third was two months ago) right now. I guess he'll probably b on IVF again! I read Jeremy's story with great interest and some sadness. My son also had lots of ear infections as a baby which cau ed him a great deal of pain. I thought you might be interested in that

Holy Bertram - 04/29/00 02:52:47
My Email:mbert6868@aol.com
Do you or a family member suffer from CVS?: yes myself
How did you find the 'Disease in Disguise' page?: MD told me about it

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How amazed I was to find that there are others out there who have this. I thought I was the only one and half crazy that I could not stop it or control it. It has been a real stress on my family when it strikes--and therefore a bigger stress for me beca se I'm helpless when it occurs.

Amy - 04/25/00 01:35:32
My Email:SheptonAngel@aol.com
Do you or a family member suffer from CVS?: yes, i do
How did you find the 'Disease in Disguise' page?: searching the web

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Thank you so incredibly much on such an informative website! I'm 15 and have been diagnosed with CVS for about a month now. It's taken forever to find out what I have, but it gives me peace of mind knowing what I have. When the doctor told me that I have VS, I had no clue what he was talking about because I'd never heard of it before. This was the first website that I looked at to find information, and it has helped SO MUCH! Thanks again for helping everyone that has this horrible "thing" by giving them s much info!

- 04/14/00 21:42:58

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Phyllis Kubler - 04/13/00 12:51:39
My Email:jmkubler@aol.com
How did you find the 'Disease in Disguise' page?: looking for information on vomiting

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Our daughter has been having problems with nausea, vomiting and diarrhea since 1992. All the testing has been done and nothing found. I will talk to our Dr. and find out if he thinks this is what our daughter has. Thank you for helping others and colle ting the data for future help to others. Thank you and God bless you.

- 04/11/00 16:11:55

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With a liver problem causing vomiting, is there a medication to relieve these symptoms

Jim McNulty - 04/03/00 12:34:29
My Email:JMcnu60634@AOL.com
Do you or a family member suffer from CVS?: Myself ?????
How did you find the 'Disease in Disguise' page?: websearch

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Audrey Mary Matallana - 03/31/00 04:13:02
My Email:lsardi@hotmail.com
Do you or a family member suffer from CVS?: NO
How did you find the 'Disease in Disguise' page?: True Yahoo

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I am a pediatrician and I suspect that one of my patient has this syndrome, I promise her to get information.

Leigh-Ann - 03/31/00 03:50:49
My Email:blbk907@aol.com
Do you or a family member suffer from CVS?: possibly my 3 yr. old son
How did you find the 'Disease in Disguise' page?: Search for Cyclic Vomiting Syndrome

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My 3 yr. old son has been to the hospital 5 times since this past July sufferring from severe abdominal pain, uncontrolable vomittng and dehydration. He has undergone numerous test and we still do not have any definite answers. His GI specialist feels h might have CVS and in all the reading I have done I'm inclined to agree. This website has been a wonderful source of information. Although it saddens me to see so many people suffering with no true answers it's nice to know that I'm not "nuts". There eally is a name for the unexplained severe vomiting that happens for no apparent reason. Our next step is to search for an expert or hospital in this area that has diagnosed and managed CVS. If anyone knows where we can start to look please let me know. Thank you and God Bless.

Candy - 03/28/00 20:43:54
My Email:DulceGo@aol.com
Do you or a family member suffer from CVS?: I believe so- my 6 year old son
How did you find the 'Disease in Disguise' page?: Frustation - trying to find out what is wrong with my baby

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I can't be sure but it is nice to know that perhaps I am not going crazy (or just being an overprotective mother) after all. Our son has been in the hospital 5 times in a year and a half due to excessive vomitting that leads him to the verge of dehydrati n. Our son was 7 weeks premature - was in the hospital for a month but then seemed to do fine - he did have to have tubes in his ears after 9 ear infections in 10 months (every time he teethed or got a cold) He started having episodes of vomitting but he us ally would kick it out so we figured it was just the flu etc. Starting December 1998 - he has been in the hospital 5 times. After the 3rd time (where the dr's thought it was just the flu - even without fever or diahrrea) they did an upper GI and we found out he has a malroated bowel which he had surgery on in June 1 99. We thought our problems were over. Not. In Septmeber 1999 he had another episode - vomitting every 10 minutes or so - like clockwork - was admitted to the hospital and once he was hydrated - was fine. Thought this may have been the flu as he did h ve a low fever this time. We just had our most recent episode this past weekend. He threw up twice Friday night - slept through the night and then commenced throwing up beginning 6:00 am. We always write it down and figure he threw up at least 40 times in 6 hours! It is just bile - his lips have bled because of the acid - he was admitted again because the suppositories doen't do any good without the IV for him - the Dr's were suprised at how fast he was dehydrating. All they can say is that they don't know but didn't do anything to try to find out. I have been so frustrated knowing what my little boy must be going through. I decided to not accept "I don't know" and see what I can find - this led me here and I wouldn't be surprised if this is it. He oesn't complain of severe pain or anything - he usually has a cold before he has an episode (but no fever or diahrrea) It often happens right before an event (1st communion, Mother's day - school vacation) Thanks for sharing stories - I am not going to l t this rest now that I can see that there is something it could be. (sorry for the lengthy post)

Jamie - 03/24/00 03:51:33
My Email:TisHerself23@aol.com
Do you or a family member suffer from CVS?: Dont know
How did you find the 'Disease in Disguise' page?: AOL Search

Comments:
Hi....thankyou for such an informative website. My son is 4, and has nonallergenic asthma. Hes been vomiting since he was an infant, and the doctors initially attributed it to the asthma, which now has, for the most part, been ruled out. Decided to go looking tonight for some clues, after an hour long bout of my son vomiting and dry heaving. Really wish I knew what to do to make him feel better. Thanks again for t

Evan Farr - 03/20/00 22:50:17
My Email:evan@farr-law.com
Do you or a family member suffer from CVS?: no
How did you find the 'Disease in Disguise' page?: search on vomiting

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Our 2 1/2 year old was a very small preemie and has had various medical and digestion problems since he was born. However, by about 18 months he had outgrown everything except that he has recurrent vomiting. It doesn't sound like CVS at all, but I thoug t maybe you might be able to steer me in the right direction. He vomits year-round, on average of once a day, often while eating or soon after eating, but also whenever he burps, and whenver he gets sad or hurts himself or cries. Usually there is no war ing, and once he vomits, he's fine. No indication of stomach pain or any other warnign signal. He doesn't eat very well, and is already small for his age b/c of his prematurity (he only weighed 1 lb. 11 oz. at birth), so it's heartbreaking for us to wat h him vomit what little food he is able to eat. Any ideas?

Leigh - 03/18/00 13:38:21
My Email:pieceofhvn@aol.com
Do you or a family member suffer from CVS?: I think I do
How did you find the 'Disease in Disguise' page?: searched severe vomiting

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Your website was most helpful. I have not been diagnosed of CVS yet but do suffer the disease. Last night was the first time I threw up blood and was scared. During the diarrhea and vomiting (which goes on at the same time), I am also very clammy and h t. I find putting a cold wash cloth on the back of my neck works - but it gets hot so fast. Thank you for helping me understand what I might have.

Ann McCart - 03/17/00 01:21:00
My Email:amcca@aol.com
Do you or a family member suffer from CVS?: I don't know.
How did you find the 'Disease in Disguise' page?: I did a search on vomiting

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My mother is 78 years old. Doctors keep insisting she has the flu. But I've never known anyone who's had the flu once or twice a week for 8 months. I'm sorry you have to go through this. Good luck in your search for a cure. And thankyou for creating this ight, it may be of some help to my mother.

Vanessa Bailey - 03/11/00 19:56:19
My Email:jbailey1@mmcable.com
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: searching for answers

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After years of questions we finally know that our daughter, Katie, is not alone. This website has been a Godsend.

tricia - 03/01/00 12:28:33
My Email:lsrules@hotmail.com
Do you or a family member suffer from CVS?: i am not sure...
How did you find the 'Disease in Disguise' page?: search engine

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hi, i'm tricia. i recently had this happen to me and it really sucks. i was trying to go to bed, but couldn't. why? cuz earlier in the night i talked to one of my buds that i do like and we are goin to meet each other this friday. well, after goin' to bed i had that thought stuck in my mind and then started to feel like throwing up. then i threw up phlem. i don't know what it is but to me ever since i was younger i'd be way excited to see a band that i like, or a person that i like...and have that awful f eling. now that we are goin' to meet this friday, it has happened again. do u know how to stop it? or what should i do? sincerely, tricia

Silvestre M. Mendoza III - 03/01/00 04:48:17
My Email:jukenfools213la@aol.com
Do you or a family member suffer from CVS?: no
How did you find the 'Disease in Disguise' page?: America Online

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I am a student at United Education Institute looking for a disease for a senior report. Studying to be a medical assistant. S. Mark Mendoza

Faith - 02/29/00 22:07:49
My Email:FTAngel@AOL.com
Do you or a family member suffer from CVS?: Yes
How did you find the 'Disease in Disguise' page?: Sickness Search

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I have two neices. One aged 20 this year and one aged 16. Both girls have suffered from this disease since about the age of 6. The youngest one, Rachel, has been admitted to Great Ormond Street Hospital several times for long periods and throughout the r whole illness no doctor ever mentioned CVS. I felt extactic when I found your page. I am going to copy it and give it to my brother to read first, then the girls. I could not believe other children suffered from this as it was always thought no one h d ever heard of such a sickness or had a name for it. Thank you.

Katherine - 02/28/00 01:26:48
My Email:ede5444@aol.com
Do you or a family member suffer from CVS?: no
How did you find the 'Disease in Disguise' page?: friend sent it to me, her child has CVS

Comments:
My friend's son has this and it helped explain to me what was wrong with him and how I can help by supporting them and helping him. I have had my own trouble with rare illnesses and sometimes your survival rests in knowing you are not alone. Thank you for sharing this with us! God Bless!

Rosemary Randol - 02/26/00 02:53:11
My Email:RARndl@aol.com
Do you or a family member suffer from CVS?: maybe
How did you find the 'Disease in Disguise' page?: web search

Comments:
I am glad to here that someone had the guts and take a stand for an illness so rare. I am looking for answers. I have been vomiting for a month and a half now and can't find any reason for it. I have had a normal ultra sound and an upper GI scope that s it so far and numerous blood tests. I however have been having pain on the right side and have vomited coffee ground blood, but still have no reason for it. I used to vomit all the time when I was a kid. Exspecially at night. I grew up on Peptobismo all the doctors thought I had GERD, but I am not sure anymore. If u have any sugestions please email me I need a guide through all of this. Thank you. Rosemary Randol

Rebecca Watson - 02/22/00 04:43:56
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: looked under cyclic vomiting syndrome

Comments:
I live in Australia and I,ve finally found some information on this disorder. My son started getting ill every 3 months from when he was 6months old.It took them 3-4 yrs to diagnose abdominal migraines. He is now 8yrs and is very healthy inbetween these e isodes. They started off only going for 12 hours, now it lasts for 3 days. The doctors have only put him onto Periactin. But it doesn,t seem to be helping. I'm beginning to wonder what to do next. Its good to know that there is other people out there that suffer from it as well, as no-one here has heard of it.

stacy strachan - 02/14/00 16:36:48
My Email:stacystrachan@aol.com
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: just searched for it

Comments:
I found this site very helpful. I have never found any info anywhere else. All I know is my sons doctor says he has this disorder. I thought he was a quack because I would ask other doctors about it and they have never heard of it. thanks!

Carleen Amadio - 01/31/00 22:59:55
My Email:camadio@pacbell.net
Do you or a family member suffer from CVS?: I only suffer from this
How did you find the 'Disease in Disguise' page?: looking for answers to why I vomit like I have in 5 mnths time with a rare break in between. My own doctor still has no answer why this is happening to me.

Comments:
I'm so happy to finally have an answer to my problem and even my Doctor has no clue as to what has been wrong with me since before September last year. I started having this problem over two years ago and when this first happened my glands were swelling (both under the arms and the throat)and I was treated with a Antibiotic and needed to do this twice and it went away, and until last year. I wasn't losin any weight but I was losing the desire for any food regardless of what it was and the bouts started in the morning only, then all day but not at night, then it was happening all the time. When I would have some cheeses in my diet I noticed how much stron er the attacks were and I have totally eliminated that from my diet and it's still happening no matter what I have to eat and noticed if I don't eat it doesn't happen at all and we all need food to stay healthy so what do you do? My doctor gave me Metoclo ramide 10mg and also Promethazine 25mg and these made it worse. I haven't done much about this and have just dealt with the constant vomiting and and felt this will be with me till I die since I've had no help from my doctor and now after reading all this information your site provides has been so helpful and feel I c n find an answer to this and seek proper help. It's sad to see so many with the same disorder as myself, but comforting to know that I'm not alone in this fight. I plan to do as much research as possible and then present this to my doctor and hopefully he'll see the truth in this and I'll get the prop r help and if not then I'll be seeking out a doctor for help with this condition. Your website has helped in so many ways and I thank you so much. Just so you know my episodes haven't stopped and in a total of 6 months I can count a total of 10 days I haven't vomited and or felt like I needed to retch.

Carleen Amadio - 01/31/00 22:54:46
My Email:camadio@pacbell.net
Do you or a family member suffer from CVS?: I only suffer from this
How did you find the 'Disease in Disguise' page?: looking for answers to why I vomit like I have in 5 mnths time with a rare break in between. My own doctor still has no answer why this is happening to me.

Comments:
I'm so happy to finally have an answer to my problem and even my Doctor has no clue as to what has been wrong with me since before September last year. I started having this problem over two years ago and when this first happened my glands were swelling (both under the arms and the throat)and I was treated with a Antibiotic and needed to do this twice and it went away, and until last year. I wasn't losin any weight but I was losing the desire for any food regardless of what it was and the bouts started in the morning only, then all day but not at night, then it was happening all the time. When I would have some cheeses in my diet I noticed how much stron er the attacks were and I have totally eliminated that from my diet and it's still happening no matter what I have to eat and noticed if I don't eat it doesn't happen at all and we all need food to stay healthy so what do you do? My doctor gave me Metoclo ramide 10mg and also Promethazine 25mg and these made it worse. I haven't done much about this and have just dealt with the constant vomiting and and felt this will be with me till I die since I've had no help from my doctor and now after reading all this information your site provides has been so helpful and feel I c n find an answer to this and seek proper help. It's sad to see so many with the same disorder as myself, but comforting to know that I'm not alone in this fight. I plan to do as much research as possible and then present this to my doctor and hopefully he'll see the truth in this and I'll get the prop r help and if not then I'll be seeking out a doctor for help with this condition. Your website has helped in so many ways and I thank you so much.

Linda Bensinger - 01/29/00 14:38:19
My Email:lbensinger@home.com
Do you or a family member suffer from CVS?: Yes, I am certain this is what my 10 year daughter has.
How did you find the 'Disease in Disguise' page?: Searching the Web

Comments:
I can't believe I have finally found an answer! For the past 3-4 years my 10-year old daughter, Jessica, has been suffering from this! Your story sounds exactly like mine. Jessica has been in the emergency room at 20 times for vomiting - no known cause No doctor has been able to help. She was tested by a gastro - Dr. last year. All he said was she had reflux. I just returned from a 3 day stay at the hospital. They said she did have strep throat this time, she threw up non stop for 3 days. (80% of t e time they can't find any reason for the vomiting). I am printing all this information out to give to her pediatrician, so I can go see a Neuroligist as soon as possible. I am so happy to find this. I hope something can help her!

shannon smith - 01/24/00 09:23:24
My Email:ssmith6217@aol.com
Do you or a family member suffer from CVS?: my daughter
How did you find the 'Disease in Disguise' page?: aol search

Comments:
please send me a link to a support group. The link will not take me there so I would appreciate it if you would send it to me. Thank you...

Lori Murdock - 01/22/00 01:55:20
My URL:http://yahoo.ca
My Email:trm@superaje.com
Do you or a family member suffer from CVS?: yes, 7yr old daughter
How did you find the 'Disease in Disguise' page?: searched cyclic vomiting

Comments:
It was worth my time to research this as I was begining to think that this diagnosis that my family physician gave my daughter was a hoax. We have since been to several GI specialists and after researching, yes this is her diagnosis. We have been at thi for 2 years now and I hope are on the right track now. My daughter has been started on Sandomigraine 0.5mg HS and has so far been doing quite well. We have had no episodes for 3 months now and she seems like a new child, happier and finally gaining wei ht. If you have any other information on this medication please send it to me. Sincerely, Lori Murdock

Amy Osburg - 12/23/99 18:56:08
My Email:www.bosburg@texramp.net
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: pediatrician

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My 5 month old daughter has been diagnosed with CVS. She has had these spells for several months now and we have just been diagnosed. My husband and I have been etremely stressed trying to find out what is wrong with our otherwise growing and healthy ba y.

Les - 12/10/99 14:50:57
My Email:113322.652@compuserve.com
Do you or a family member suffer from CVS?: me
How did you find the 'Disease in Disguise' page?: netscape search

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My doctor diagnoses abdominal migraine. I am male 43 and apart from recent bouts, have not had a migraine since I was 14/15. I have also looked up info on menieres disease, which seems to describe my symptoms more accurately as I do not suffer stomach pain. I just want it to stop, so I can get on with my life. Thanks Les

Carrie - 12/03/99 03:24:44
My Email:cdachwitz@silk.net
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: web brouser

Comments:
It was good to get some information about this mysterious disorder. I live in B.C. Canada, and I have a niece in Ontario who has CVS. My own doctor here had never heard of the disease until I mentioned it to him. My heart breaks for my sister and her d ughter. We recently visited them this past summer for a short period of time, and the day we were leaving she was getting sick. She usually gets sick every two weeks or so. She recently has been trying this migraine type medicine and has not been sick ow for a month. We're keeping our fingers crossed! One thing I'm not sure about is if people "grow out" of this disease. I get asked that frequently by family and friends. Keep up the support work for families with CVS kids. It's great! I'll be visiti g this site again.

jean porter - 11/28/99 02:33:41
My Email:porterjeaninkc@aol.com
Do you or a family member suffer from CVS?: my 7 yr. old daughter
How did you find the 'Disease in Disguise' page?: info from hospital

Comments:
My 7 yr. old daugter, Monica, was diagnosed with CVS early this summer. She required I.V. fluids 3 times in 5 wks. Each time she would wake up complaining of abd. pain,refuse everything but water, and sleep (she was unable to stay awake). Hrs. later the vomiting would begin. Within 24 hrs. she would be dehydrated (by then she was even refusing water). A diagnosis was such a relief!!! So far her current meds break the cycle of vomiting. Her body still goes through the sleepiness (though not quite as severe), and her appetite decreases to little or nothing. This lasts for about 48 hrs. Then she's herself again. I feel very grateful that we had a diagnosis so quickly. She spent a weekend at Children's Mercy Hospital in Kansas City, Missouri. They actually have a Dr. that specializes in CVS- Dr. Gerald Tremblay.

debbie v - 11/23/99 03:37:33
My Email:usinet.vand140
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: internet

Comments:
My daughter began vomiting when she was in kindergarten when she was five years old. At first I thought that it was just a viral type thing but it would occur again in one and possibly two weeks later. I also noted that it began early morning around 3:3 -4;30am when she would awaken and vomit every 5-10 minutes for several hours, usually 2-4 hours. She would then sleep for 1-2 hours and then usually be fine though somewhat pale. During the attacks she would be quite ill unable to speak and very letharg c. She had occasional times with abdominal pain but most often she did not. She will get diarrhea later on in the day. She also has complained on occasion of a headache on one side later on in the morning when she is still not completely better. Unfor unately, this has become quite a stressor for our family as both of us are full time working parents. She misses school and we have to make last minute arrangements for child care. I am most grateful that she has a very slight case of this at this point in time. I am unable to link it to any thing , though most of our occurrences have been in Nov., Dec., and Jan.. This has only happened four times this year and I was hoping that she was growing out of it. She has been diagnosed with allergies and has lso missed shcool because of this also. I feel some of this is secondary to anxiety over school issues but like everyone else it is difficult to pinpoint. your site has been very helpful and I am glad to know it is available and we are not alone.

Debbie V. - 11/23/99 02:51:34
Do you or a family member suffer from CVS?: ?Daughter

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Alyssa - 11/15/99 20:35:00
My Email:NazChika@aol.com
Do you or a family member suffer from CVS?: yeah, me (yehaw.)
How did you find the 'Disease in Disguise' page?: Surfin'

Comments:
I always thought i was the only one who had something like this, but i'm not, and i'm glad i'm not alone (in a way - sorry that sounded sadistic) what i mean, is its good to know there are others out there i can relate to. we never even knew i had a syn rome until recently. the doctors just called it cyclic vomiting, so i guess they came close! however, i dont get it from stress, i get it when i jog too much or dont eat or drink much. very odd. anyhoo...i love your site! very informative!

Russell Thatcher - 11/15/99 08:53:15
My URL:http://www.npl.co.uk
My Email:Russell.Thatcher@npl.co.uk
Do you or a family member suffer from CVS?: yes, my daughter age 11
How did you find the 'Disease in Disguise' page?: informative

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Anna & James Evans - 11/12/99 16:02:32
Do you or a family member suffer from CVS?: yes

Comments:
Thank you for your article. My daughter Ashley Lauren Evans has just been diagnosed w/ CVS. She's a beautiful outgoing 10yr old that has been suffering from this only for a few months. I'm in a state of despair for a cure and a feeling of helplessness but, your article has helped more than you can imagine. My prayer's are with you and other's that are suffering from CVS. Thank You for sharing your story, Anna Evans

Anna & James Evans - 11/12/99 15:46:46

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Scott Lester - 11/05/99 03:13:26
My Email:snlrlester@aol.com
Do you or a family member suffer from CVS?: yes (probably)
How did you find the 'Disease in Disguise' page?: search of internet

Comments:
Son Ryan 19 mos. old - recurrent vomiting in patterns - 5 ER visits this year for IV's. Possible diagnosis of CVS, although other causes have not all been eliminated. Thanks for the information.

mrs Ali - 11/01/99 03:51:24
My Email:samfay_2000@yahoo.com
Do you or a family member suffer from CVS?: yes,my daughter
How did you find the 'Disease in Disguise' page?: Looking up cvsa

Comments:
Hi! I can really relate to your story about your son Jeromy as I have a 9 yrs old daughter with the same illness.If you get my mail, I would like to talk with you as it would be a help to my daughter and us.Thanks

- 11/01/99 03:44:19

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Dan Verkamp - 11/01/99 03:14:44
My Email:Dverk38947@aol.com
Do you or a family member suffer from CVS?: possibly
How did you find the 'Disease in Disguise' page?: searching the internet for vomiting

Comments:
The last time our daughter Jessica was sick, we noticed that dehydration had already set in before she was sick. When we questioned the doctor about dehydration coming first, not after the vomiting, we got nowhere. On our own, we have really stressed dr nking plenty of fluids, water, gatorade and apple juice, and we have not had an eppisode since July...it is now October, and no medication for a couple of months. Please let us know if you have any information relating to this. Could the cure be as simp e as..."drink honey drink!"

Ernesto Guiraldes, M.D. - 10/21/99 01:44:21
My Email:eguirald@puc.cl
Do you or a family member suffer from CVS?: No
How did you find the 'Disease in Disguise' page?: By an e-mail I received

Comments:
It's an exceedingly useful site for patients, families and concerned doctors. Thank you for sharing your experience and thoughts with all of us. Your site is an invaluable resource. Ernesto Guiraldes, M.D. santiago, Chile

Jorge Martin - 10/11/99 21:13:05
My Email:ajax@infosel.net.mx
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: Yahoo

Comments:
I believe my son Jorge Jr has de disease, he is 2-1/2 years old and has been vomiting for 1 year, every 17 days aprox for 2 days each episode. Its good you have this page. Thanks

ERIKA - 10/06/99 21:00:54
My Email:erikacasillas70@hotmail.com
Do you or a family member suffer from CVS?: NO
How did you find the 'Disease in Disguise' page?: I HAVE TO WRITE AN ESSAY AND I WAS JUST LOOKING FOR SOME INFORMATION ON CHILDREN

Comments:
I DIDN'T KNOW ANYTHING AT ALL ABOUT CVS. IT IS GREAT THAT YOU HAVE ALL THIS INFORMATION ON THE INTERNET.

Patricia Duboue' - 10/05/99 18:54:21
My Email:pduboue@mailhost.tcs.tulane.edu
Do you or a family member suffer from CVS?: my 17 year old sone
How did you find the 'Disease in Disguise' page?: very true

Comments:
It is comforting to know other people go through what you go through and to look at what is on paper in black and white and think you are reading your life's story. My son was in the hospital 8 times over a 10 month period between 9/98 and 6/99. He star ed taking Elevil, (amitripolyne) every night, 40 mg. and since, he still, about once a month) feels the excruciating pains, nausseau, lethargicness and comatose state, sensitive to smell, light and noise, but he no longer goes through the continual vomiti g and therefore we do not have to put him in the hospital. Looking back, it is a wonder that we survived and life is much better since he started the Elevil. I still feel for him when he misses a camping trip or a football game, but he seems to hold up ine. I think when we finally decided not to put him through any more test, and to accept the diagnosis of CVS, a relief came over me. Mom

JoAnn Sulzinsky - 09/09/99 01:06:56
My Email:JoAnnSulz@aol.com
Do you or a family member suffer from CVS?: no
How did you find the 'Disease in Disguise' page?: A friend who is a nurse

Comments:
I am a school nurse for a student that is being tested for abdominal migraines. Her Dr. said she may be in the beginning stage of the disease. Does it always progress to more frequent bouts of vomiting or can it be controlled by medicine? Your site is very helpful and I am grateful for your sharing of this information. I am so sorry that so many people are suffering with this condition but I am glad to hear that medication helps relieve the discomfort.

mary jane - 08/28/99 02:39:39
My Email:boney99@mailcity.com
Do you or a family member suffer from CVS?: yes, it's me.
How did you find the 'Disease in Disguise' page?: looking for an answer

Comments:
I am one of them. The last one was two days ago,after lunch till dinner time.

Stacey Horan - 08/25/99 16:35:53
My Email:Stacmickey@aol.com
Do you or a family member suffer from CVS?: Yes, I suffer from it.
How did you find the 'Disease in Disguise' page?: From the CVSA Web page

Comments:
I am 24 years old and still have episodes. I have had them for as long as I remember. Just a couple of months ago I was in the hospital for Dehydration. It has slowed down since I was yonger. I get it 2-3 times a year now, unlike 4-5 times a year when I as younger. I was never diagnosed. I was told it was my diet some kind of food alergy. I still miss work and school (college) because of the episodes. Trying to explain CVS to my boss is quite difficult. I printed out many pages of your web site to sh w my boss and other people who are confused by CVS. Thank you for all the information on your site. I can relate to all of it. Stacey Horan Wethersfield, CT

Robin - 08/22/99 00:43:31
My Email:simmsfarm@earthlink.net
Do you or a family member suffer from CVS?: I think daughter has it
How did you find the 'Disease in Disguise' page?: Just stumbled onto it. Thank goodness!

Comments:
My 10 year old daughter has never been diagnosed with it, but it sure sounds like what we have been going through since she was 5. She started the vomiting 2 days before she was to start kindergarten. She would have bouts of vomiting every week or two. But they would only last about 7 or 8 hours. She would vomit for maybe 6 hours straight, then sleep for a couple of hours and get up fine. We had her to the doctor many times, without a diagnosis. Always was told it was a stomach virus. Right, every week or so? Thankfully she has only had a couple of attacks of this in the last few years. When my daughter was at the end of second grade, I pulled her and my other daughter out of public school and started homeschooling. Boy what a difference. She has only done the vomiting a few times since. I do believe it has alot to do with nerves and anxiety. My daughter is very small for her age. She is soon to be evaluated for Turner's syndrome. Does anyone out there know if there is a link with the two?

Anita White - 08/18/99 23:07:34
My Email:anita.white@nf.sympatico.ca
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: doctor recommended it.

Comments:
I would just like to say that I have a nice year old daughter that has been diagnosed with CVS, and I am just now reviewing your page. I think it is great so far, and I look forward to reading and studying it more intensely. Any new and further informatio would be greatly appreciated. Thank you so very much.I'll be in touch again soon.

Jackie - 08/13/99 01:26:37
My Email:kenpbs@aol.com
Do you or a family member suffer from CVS?: My daughter
How did you find the 'Disease in Disguise' page?: searched under abdominal migraine, her diagnosis

Comments:
My daughter has episodes of vomiting for about 8 hours then she is in horrific pain for up to 3 more days. The pain is far worse than the vomiting. She turns yellow and her face swells. She gets tetaney in her hands, wrists, knees, ankles and feet. Sh 's on Tegretol and Periactin. The Periactin has shortened her episodes to 24 hours but it hasn't eliminated them. Do Jeremy's symptoms match these? Has he tried Periactin? My daughter has tried all the meds you listed and none helped. In fact they ag ravated her episodes. Thank you.

- 08/11/99 06:57:46

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bernie cahill - 08/03/99 18:44:10
My Email:bjcahill@indigo.ie
Do you or a family member suffer from CVS?: yes my nephew
How did you find the 'Disease in Disguise' page?: surfing the webb

Comments:
i would like to know more about the illness and see if there is anything else to help. my sister who has the child would also like to know more about what it is she is actually dealing wtith, many thanks Bernie cahill

shawn beaulieu - 08/01/99 11:14:24
My Email:jjbsab344@prodigy.net
Do you or a family member suffer from CVS?: my daughter
How did you find the 'Disease in Disguise' page?: by chance :-)

Comments:
this was very informative THANK YOU. my daughter follows most of the critera but doesn't have all the symptoms you stated. although she does have other underlying problems. her doctors have come up with this diagnosis also. we've tried several different m ds all ready. i just wanted to say thanks and i'll be back again for any additional info you might add to this. i've bookmarked the page. :-)

DAWN METCALF - 07/03/99 16:02:13
My Email:BROOKLYNGATOR@ATT.NET
Do you or a family member suffer from CVS?: HUSBAND
How did you find the 'Disease in Disguise' page?: SEARCH FOR ANSWERS

Comments:
I SIGNED YOUR GUEST BOOK LAST NIGHT BUT DID NOT HAVE THE EMAIL ADDRESS. I WOULD LIKE TO HEAR HOW JEREMY IS PROGRESSING ESPECIALLY IF ACCUPUNCTURE IS HELPING.

DAWN METCALF - 07/03/99 15:59:24

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DAWN METCALF - 07/03/99 15:59:23

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Dawn Metcalf - 07/03/99 02:25:55
Do you or a family member suffer from CVS?: husband
How did you find the 'Disease in Disguise' page?: my mother serched

Comments:
It was comforting to be able to find out information about CVS and find out what meds were being taken. Thanks for sharing your experience.

Dawn Metcalf - 07/03/99 02:24:33
Do you or a family member suffer from CVS?: husband
How did you find the 'Disease in Disguise' page?: my mother serched

Comments:
It was comforting to be able to find out information about CVS and find out what meds were being taken. Thanks for sharing your experience.

Nancy Sullivan - 06/19/99 08:01:04
My Email:NancyS4@webtv.net
Do you or a family member suffer from CVS?: My son
How did you find the 'Disease in Disguise' page?: internet search

Comments:
My 13 year old son was just diagnosed with CVS along with several other disorders. He has experienced complications all his life. At the age of 10 I demanded a test that revealed reflux with grade 2 esophagitis. During that point in time his life bec me a constant nightmare and continued untill finding current physicains. I cannot count the times I have watched him suffer that I prayed to God that whatever this was to take it from him and give it to me. We have both felt so isolated fighting something we had no diagnoses for. Describing this my son states, "It has robbed me of my childhood." I greatly appreciate your website. Thank You, Nancy

keisha - 05/28/99 18:49:19

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keisha - 05/28/99 18:49:18

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keisha - 05/28/99 18:49:18

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keisha - 05/28/99 18:49:17

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William R. Alschuler - 05/06/99 17:59:45
My Email:walschulr@hotmail.com
Do you or a family member suffer from CVS?: daughter
How did you find the 'Disease in Disguise' page?: A search on medical chatrooms

Comments:
My daughter has had severe stomach cramps, 2 or 3 days of vomiting and some diarrhea, and prostration due to dehydration about every two weeks since January. She has been through a large battery of tests which seem to eliminate allergies, infectious disea es and parasites, liver malfunction, gall stones and a number of other things. Until today we have had no diagnosis but in looking at this and other websites I feel sure it is CVS. It is bad news that there is no cure, and this is because so far there is no known cause. I have thought a lot about this and I currently favor the following, due to both the particular case of my daughter, my own medical history, and also now the info re orted on the web. I think CVS clearly involves 1) periodic changes to body chemistry which might include periodic hormonal changes and perhaps blood sugar changes. 2) It might be triggered and/or maintained by an infection, viral, bacterial or parasitic, hough so far none has been found in my daughter (please note campylobacter pylori, long known to inhabit the stomach, was only recently shown to be the leading cause of certain types of ulcers).3) It is possible that there is an external trigger. If one t kes "migraine of the stomach" literally, and some of the treatments with beta blockers mentioned on this page suggest that assumption, then triggers might include caffeine, MSG, and tyramine (which is found in red wine, aged cheese, pickled herring, liver products and some other things. Yes, it seems unlikey that these are in the diet of infants, but at some point it might be worth checking.) We are also investigating the school menu cycles, disenfection cycles in the kitchen, dining hall, her dorm room an place of work. I favor 1 and/or 2 at the moment. The guest book entries do not go into much detail about circumstances or investigations. If you have thought carefully about such issues and have information that might shed light on these or other hypothe es lets talk in detail. You can email me at walschulr@hotmail.com.

- 04/28/99 21:34:07

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Geri Gotaas - 04/28/99 15:41:32
My Email:ggotaas@muskegon.k12.mi.us
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: dumb luck

Comments:
Just wanted to touch base with someone who has experience with this syndrome (for lack of a better word). My 35-year old married son was diagnosed with this malady last August at Mayo Clinic. He is currently going through an episode which is in its sixt week. He is on IV's at home and Zofran. All I can say is he is starting to look human. Good talking with you. Geri

pam - 04/25/99 15:33:28
My Email:pam515@erols.com
Do you or a family member suffer from CVS?: yes, 3 yr old w/CP
How did you find the 'Disease in Disguise' page?: family member

Comments:
Thanks so much for cataloguing this info.

Colleen Corbin - 04/22/99 14:21:10
My Email:ccorbin@hotmail.com
How did you find the 'Disease in Disguise' page?: internet search

Comments:
My friend has been suffering for over a year with recurrent vomiting. He has been through all possible tests to find the cause and is now going to Ann Arbor every few weeks to undergo more tests. So far, it's a mystery. Doctors are wondering if it's just stress reaction. He is 47 years old, with no previous problem like this. He is, however, an alcoholic. Is it possible that someone in their 40s would suddenly acquire CVS? Any information would be very much appreciated.. Thank you, C. Corbin

Susan Whanger - 04/18/99 00:28:12
My Email:calico@ktis.net
Do you or a family member suffer from CVS?: yes My daughter Sarah
How did you find the 'Disease in Disguise' page?: search

Comments:


Judy Griffin - 04/13/99 19:10:16
My Email:JGRI631287@aol.com
Do you or a family member suffer from CVS?: Yes. Two of my three children
How did you find the 'Disease in Disguise' page?: searched cyclic vomiting

Comments:
It is such a relief to find this web site. We have been under such stress for the last 7 and a half years. While I hate to see other children suffer so, it is good to know that we are not alone. People give us such funny looks and question the reality f this. We have even been suspected of making our daughter vomit; although, no one told us about those suspicions until I found a toxicology report in a chart that I was taking to a new doctor. I am just relieved to know that we are not alone.

Tandi Weiss - 03/20/99 13:20:38
My Email:weissmtea@aol.com
Do you or a family member suffer from CVS?: Austin - my son
How did you find the 'Disease in Disguise' page?: CVSA home page

Comments:
Hi. My 4 year old son has been suffereing with cyclic vomiting since he was 9 months old. We have been to many doctors and have had so many tests run, we have lost count. We now live in Atlanta, GA and have found a wonderful neurologist who will start new round of testing. He explained to us that kids get put into this category when every other disease has been ruled out. Austin does fit many of the symptoms that have been described but not all of them. He never really feels sick - will vomit and v mit and then want to play. Does not do the "sleep" thing. When he was younger, he would vomit 10-15 times every night - always at the same time - between 8:00p.m. and midnight. As he gets older, the vomiting has decreased but the frequency of cycles se ms to be increasing. Anyway, it is just nice to know there are others out there who understand what this puts a family and your child through. The last cycle Austin had, he suffered with horrible abdominal pain for 5 nights in a row. It was the worse cycle yet - never befor has he had pain. Thank you for creating the website. I have left my e-mail address. Tandi Weiss

Lisa - 03/09/99 16:30:38
My Email:Llively403@aol.com
Do you or a family member suffer from CVS?: myself
How did you find the 'Disease in Disguise' page?: surfing

Comments:
I am a 41 year old female with CVS. got sick in 1996 and was diagnosed in 1997. I didn't have one episode during 1998. So far in 1999 I have already had to have IV fluids on two different occasions. Any info and support will be welcome. Thanks alot

Denise - 03/09/99 09:35:36
My Email:D2U4MORE@webtv.net
Do you or a family member suffer from CVS?: 8y.o.twin sons
How did you find the 'Disease in Disguise' page?: visit often

Comments:
I have 8 y.o. twin sons wih this disorder. They were diagnosed when they were 5 after years of the doctors telling me that they had the flu whenever I took them in. I finally found the diagnoses myself and showed it to the doctor, who then sent us to the hildren's Hospital in Seattle where they confirmed my suspicions. This is a very scary illness for all involved, especially the children that are affected. My children tell me that it is spinning like a tornado when they have one ad their screams because f the pain is heart-wrenching.Keep up the good work and let's find a cure for this thing.

Kimberly T. - 03/07/99 20:51:22
My Email:stnkerbdle@aol.com
Do you or a family member suffer from CVS?: Yes....my son
How did you find the 'Disease in Disguise' page?: a friend told me about it

Comments:
Thanks so much for having a web page that explains more about this. I feel like I am all alone in this. My son was diagnosed with abdominal migraines. He is affected by certain foods. Although we watch what he eats, he sometimes stills vomits. It is n excrutiating pain for him. I feel so sorry for him it just breaks my heart that there is nothing we can do about it. Our doctor that diagnosed him has just recently died. We were so lucky that we were assigned to see him that day and not some other p diatrian. He was an allergy doctor that picked up on it right away. Now I have no idea where to go because all the other doctors I have taken him to seem to think it is a virus and have never heard of abdominal migraines. I feel like I am at the end of y rope. When we took Jordan to the doctor,(the one that diagnosed him), he told me that he should grow out of it as he gets older. We can only hope and pray. Thanks again for your thoughts and help! Kimberly

- 02/27/99 23:15:57

Comments:


- 02/27/99 23:08:51

Comments:


Traci Hartman - 02/27/99 22:48:47
My Email:hartman@williams-net.com
Do you or a family member suffer from CVS?: Yes, My son.
How did you find the 'Disease in Disguise' page?: CVSA link

Comments:
Your son's story could have been written about my own son. I'm glad to hear of other people, but also saddened to think of these poor kids. I'm trying to collect as much info as I can on this. Let me know of any suggestions, please. Your son is in my rayers, as well as my own. Traci

Heather - 02/17/99 00:50:49
My Email:hstar78@yahoo.com
Do you or a family member suffer from CVS?: I do.
How did you find the 'Disease in Disguise' page?: Yahoo search.

Comments:
I am a 20 year old female. I have had migraines ever since I was a young girl of two. At 12 I developed epileptic seizures as well and have had them ever since. I have had a vomiting syndrome for all of my life. I would appreciate any information you ould send me.

Heather Dolan - 02/17/99 00:50:16
My Email:hstar78@yahoo.com
Do you or a family member suffer from CVS?: I do.
How did you find the 'Disease in Disguise' page?: Yahoo search.

Comments:
I am a 20 year old female. I have had migraines ever since I was a young girl of two. At 12 I developed epileptic seizures as well and have had them ever since. I have had a vomiting syndrome for all of my life. I would appreciate any information you ould send me.

Lee - 02/13/99 21:06:20
Do you or a family member suffer from CVS?: yes,son Dave
How did you find the 'Disease in Disguise' page?: Julie adult coordinator

Comments:
very informative, Thank you for all your hard work. You are appreciated!!!!

Ong-Pin FOO - 02/04/99 13:30:27
My Email:foopin@netscape.com
Do you or a family member suffer from CVS?: no
How did you find the 'Disease in Disguise' page?: Through a link

Comments:
Thank you for your page. I'm a pediatrician treating a 2-year-old girl with the condition, and her mum will really appreciate all this information. I think she will be contacting you soon!

EBurns - 02/03/99 19:20:07
My Email:eburns.TOAST.Alb.k12.ny.us

Comments:
I'm trying to get info re:my daughter.She may have CVS she has severe nausea,exhaustion,wretching...

Betty DuBois - 01/26/99 07:06:00
My Email:dubois@msohio.net
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: research on net

Comments:
My 10 yr. old daughter has been diagnosed with CVS. I feel helpless and ignorant. Please help me to learn more about this condition, so I can help my daughter deal with this!

Steven - 01/14/99 22:55:07
My Email:elmogus@meginc.com
Do you or a family member suffer from CVS?: I have it
How did you find the 'Disease in Disguise' page?: Google Search

Comments:
I'm 9 years old and I have CVS too. I'm relieved that I didn't have a all new disease. I just got out of the hospital and am not feeling too good. I used to have about six weeks in between episodes, and then it would get less and less time until it was ab ut 10 days from the beginning of one episode to the beginning of the next. I started Inderal and Prilosec about a week ago.

Gina - 01/09/99 13:56:41
My Email:hobeck@LDD.com
Do you or a family member suffer from CVS?: not sure
How did you find the 'Disease in Disguise' page?: looked up vomiting

Comments:
I'm not sure if I have CVS,my numerous dr.'s don't know. Im 34 and started vomiting 2 months ago,I take zofran 4to6 times a day.It's stopped working.Trying to get info on CVS. I know how miserable I (an adult) feels to be going through this, I can't imagi e how a child suffering with this for years copes.(or parents) This is such a horrible disease, one that I've never heard of until I got sick. My thoughts and prayers are with all who suffer with this illness. God Bless.

Angela - 01/08/99 18:47:27
My Email:S.HODGKINS@Virgin.net
Do you or a family member suffer from CVS?: my daughter Megan
How did you find the 'Disease in Disguise' page?: linked from Yahoo's medical page

Comments:
I am so happy! I am not the only one in the world with a daughter with this problem after all! It is a relief to find other stories just like mine - Megan has had these attacks since the age of 5, she is now almost 9 and gets them every 2 weeks. We are seeing a paediatrician at the moment, and she is on medication, but it doesn't seem to be doing h r any good as yet. I will re-visit this site again when I have more time, got to rush! Thank you so much! Angela (and Megan!)

diane - 01/05/99 20:33:09
My Email:jazzmom7@hotmail.com
Do you or a family member suffer from CVS?: my 5 yr old son
How did you find the 'Disease in Disguise' page?: searched "cvs"

Comments:
I'm glad to know there is information about this out there. I had never heard of cvs until earlier in '98 when my son was diagnosed. He's had the symptoms since infancy, and vomits about 2-3 times per year- always bile. He experiences extreme light sensit tvity and has headaches during these episodes. Our pediatrician wasn't that helpful in explaining cvs-just that it wasn't anything to be overly concerned about, and that he'd outgrow it more than likely.

paul friend - 12/30/98 01:10:16
My Email:woodfriend@cyberportal.net
Do you or a family member suffer from CVS?: no
How did you find the 'Disease in Disguise' page?: search

Comments:
I am an M.D. following a patient with CVS and am always looking for new suggestions or approaches to prophylactic or a cute management therapies which have worked in others.

Linda - 12/21/98 14:00:58
My Email:lhdhome@frontiernet.net
Do you or a family member suffer from CVS?: I do
How did you find the 'Disease in Disguise' page?: surfing

Comments:
I'm sitting here almost crying in relief that there is actually a known disease for this syndrom.I am an adult. I have suffered fron this for over 12 years. From bouts months apart to every two weeks now. My children do not remember when I was well. F om the time an episode starts until it is over usually in one day nothing stops the course of the attack. I have been hospitalized 4 times in the last year. I have been scoped, scanned, and sounded from one end to the other. Normal, normal and normal. At least now I know I am not alone. Thank you. Linda

MARYSE GOODALL - 12/09/98 12:29:34
My URL:http://MGoo9446
My Email:MGoo9446@aol.com
Do you or a family member suffer from CVS?: SON AGE 13

Comments:
Our son has suffered from CVS for 3 years and has had four severe attacks requiring hospitalisation and intravenous fluids. It always seems to be triggered by some mild infection,he has a high white cell count at the time. Each episode of vomiting has cau ed a haematemesis. He loses about half a stone in weight during attacks.He has had an endoscopy which revealed slight oesophagitis not reqiring treatment, and various blood tests, all normal. His attacks last about four days.He is very healthy and happy normally, but rather underweight. I am very pleased that I have found CVS websites and realise that this problem appears to be a dis inct illness.

Alejandro Costaguta - 12/01/98 01:45:17
My Email:alejandrocostaguta@usa.net
Do you or a family member suffer from CVS?: no
How did you find the 'Disease in Disguise' page?: looking for help for my patients

Comments:
Congratulations! you are doing an excellent job. I´m trying to do something for my patients and their families here in Argentina (something like a support group). See you later!

gayle - 11/13/98 00:43:15
My Email:gg@mcn.org
Do you or a family member suffer from CVS?: yes..my son
How did you find the 'Disease in Disguise' page?: web search

Comments:
chris age 30 has suffered 30 years I was sure that the syndrome had a name..thought it would take years to find...websearch first entry..we had always called it "cyclic vomiting" his grandma always called it abdominal epilepsy ...get back to me THAN

lynn rimer - 11/04/98 23:03:58
Do you or a family member suffer from CVS?: no
How did you find the 'Disease in Disguise' page?: specifically looked

Comments:
I'm a senior nursing student doing a rotation in community health. One of my clients has a child with CVS. I'd never heard about it and wanted to find out all that I could so that I can be an advocate for my patients and help them to educate other health are professionals.

Kim - 11/02/98 22:37:04
My Email:jbrunelle@snet.net
Do you or a family member suffer from CVS?: yes me
How did you find the 'Disease in Disguise' page?: Searched under name

Comments:
I learned more from this page then from my doctors. Since I am an adult I am finding most the information is on children. My vomiting has progressed to the latest episode being almost two weeks, needless to say I spend alot of time in the hospital becau e without their intervention I do not ever stop. You page has helped alot. I am hoping with the medicine that they are trying will help me. I do also notice that if my sinuses are bothering me, than my episodes last a little longer. Thanks Kim

Robin - 10/22/98 14:30:55
My Email:robinspano@hotmail.com
Do you or a family member suffer from CVS?: daughter
How did you find the 'Disease in Disguise' page?: CVS site

Comments:
You pose the question how much stress does a two year old have? Holidays, visitors and "happy stress" often triggered my daughter's episodes, especially Halloween and Christmas. Going to Girl Scout camp was the most recent. She was diagnosed at age 4 (now she is 10) and has had symptoms since infancy. She is being successfully treated with Periactin by a great pediatric gastroenterologist, Dr. Robert Stone of Children's Hospital in Akron.

Robin - 10/22/98 14:17:33
My Email:robinspano@hotmail.com
Do you or a family member suffer from CVS?: daughter
How did you find the 'Disease in Disguise' page?: CVS site

Comments:
You pose the question how much stress does a two year old have? Holidays, visitors and "happy stress" often triggered my daughter's episodes, especially Halloween and Christmas. Going to Girl Scout camp was the most recent. She was diagnosed at age 4 (now she is 10) and has had symptoms since infancy.

10/03/98 21:41:46

Name: Bad Bunny

My Email: Email Me

Comments:
Nice page. Very informative. Keep it up.

John Truitt - 09/04/98 02:29:03
My Email:jtruitt@uncc.campus.mci.net.com
Do you or a family member suffer from CVS?: Yes. My nephew
How did you find the 'Disease in Disguise' page?: CVS Homepage

Comments:
Wonderful page. I hope you don't mind that I printed it out for my brother and his wife to read. They don't have a computer. My nephew was diagnosed with this about a year ago (He is four). He has been in the hospital about four times and is one of tw children in his County (Haywood County, NC) to be diagnosed with it. His brother, who is 1 1/2 years old) has been hospitalized twice with the same sort of thing, but they have not diagnosed him with CVS yet. Thank you for your time, and help. Your do ng a great thing.

Karen L. - 07/13/98 22:03:14
My Email:Karen@lrgmanagement.com
Do you or a family member suffer from CVS?: Daughter
How did you find the 'Disease in Disguise' page?: Link from CVSA via NIH Website

Comments:
Good job. It's helpful to find clues to your own child's condition and management of the episodes by reading the experience of others. I'd be very interested in hearing about specific drug therapy treatments being described.

jackie Smith - 07/11/98 14:10:59
My URL:http://www.oocities.org/Heartland/Flats/4202
My Email:badbelly@oocities.com
Do you or a family member suffer from CVS?: yes I do
How did you find the 'Disease in Disguise' page?: Just looking through CVSA stuff

Comments:
been trying to join webring, got my page, found background etc. just don't know how to get my story from application to my page and, how to get the saved background etc transfered to my page any help would be appreciated.

Mrs. Marie Watson - 07/11/98 06:03:40
Do you or a family member suffer from CVS?: Myself
How did you find the 'Disease in Disguise' page?: Very Informative,I was really touched by your son's phlight through this horrible diease and as a mother as well as a fellow C.V.S. sufferer my heart goes out to you for all your love and support th t you have given him in all these years that he has suffered with this terrible diease.

Comments:
I will contact your E-Mail number so that I may provide you with the name of a medication that has been somewhat successful in controling my attacks. My E-Mail number is bwat@axon.net , but we have just recently hooked up and I'm not sure if it is operata le at this point.I have suffered from C.V.S. since I was 4 yrs. old but it was only diagnosed in November 1997. I can't tell you how over-joyed I was to discover that what I suffered with was actually a diease that other people experienced as well ,althou h I was heart broken when I thought of chidren suffering like I do. I look forward to hearing from you . Marie Watson

Ed Lacombe - 07/10/98 17:29:49
My Email:Ed_Lacombe@compuserve.com
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: from Joyce Leeper

Comments:
We are going to try acupuncture ASAP and will let you know. Tried to do a printout of the 3-98 update but there were a lot of overstrikes. Keep up the good work.

Cheryl Noll - 07/07/98 19:42:20
My Email:a-noll@nwu.edu
Do you or a family member suffer from CVS?: I think so
How did you find the 'Disease in Disguise' page?: Web search

Comments:
I have a 10 year old daughter with global delayed development. We have been hospitalized 5 times in the last year with the uncontrolable vomiting, every 10-15 min for 3-5 days. We have more bouts with it, but have been able to control the dehydration at home. No one can give me an answer, the most com on is a virus...don't thinks so! CSV fits better than anything else we have been told. I was at the doctors office today after being discharged from the hospital yesterday and this syndrome was mentioned for the first time. I am madly going through eve ything I can find on the subject now. Do you know if this syndrome is associted with anyother sydromes, Kate has never been disagnoised with one yet. Thanks for the ear and the information.

Teresa Mann - 07/06/98 22:27:31
My Email:teresam@network-one.com
Do you or a family member suffer from CVS?: my son Timothy
How did you find the 'Disease in Disguise' page?: Timothy's doctor , Dr Paul Parker at Jackson Ms told us about it.

Comments:
Hi to everyone I'm glad that there is a place that people can find out about things and talk to other people that has the same trobles that they do . My son is on Periactin twice day and it seem to work for him as long as he take his medicine like he is told to when he forgets he has a nother spell its not as bad like it use to be but its still bad. may God bless everyone and may they get better Teresa Mann

jeanette - 06/30/98 00:32:24
How did you find the 'Disease in Disguise' page?: ken

Comments:
just to say hi! I"m in AZ to see ken and got the chance to say hi on your page. See you later.

Karen Cantor - 06/28/98 20:07:01
My Email:jkcantor@earthlink.net
Do you or a family member suffer from CVS?: Zacharey my son age 5
How did you find the 'Disease in Disguise' page?: searched cyclic vomiting

Comments:
I'm so sorry to see so many children affected by this. Thank goodness my son has a very mild case. I see what Zachary and I go through and my heart goes out to anyone with cvs. I have found in my son's case that stress, sleep patterns and diet have alot to do with his episodes. Most Migraine foods prompt an attack. From what I've read most people fi d it a comfort that this syndrome has a name, this does not comfort me at all. They gave it a name but that is the only thing this disease has. I want an explanation!! Very frustrated, Karen Cantor

Jayne Chisholm - 06/14/98 18:19:58
My Email:jacyl@msn.com
Do you or a family member suffer from CVS?: Adam, Son, (21)

Comments:
Adam was asphyxiated at birth. He is 21 with a comprehension age of 8 years. He is recovering from yet another attack of CV. However, this time the doctor decided to treat the anxiety associated with it and prescribed 2mg Diazepam and, thank God, it see ed to do the trick. Adam vomits every 5 minutes, cannot speak or swallow and bursts all the little blood vessels in his face and eyes from choking as he retches. He has never had IV drip and, one time, we were made to pin him down (in hospital) put flui in his mouth and hold his mouth and nose closed! He was just 8 years old then. Adam has been a victim of utter neglegence. Now my heart breaks each time he is ill. Thankfully this last episode was shortened by the use of Diazepam. I can relax now, u til the next time.

Jayne Chisholm - 06/14/98 18:14:51
My Email:jacyl@msn.com
Do you or a family member suffer from CVS?: Adam, son (21)

Comments:


- 06/03/98 21:37:33

Comments:


Diana - 06/03/98 17:25:37
My Email:spark1@sprint.ca
Do you or a family member suffer from CVS?: My son , Joshua
How did you find the 'Disease in Disguise' page?: Searching the Web

Comments:
My son Joshua was diagnosed with CVS a year ago. We have suffered for three years with this illness. Josh is repeating grade 5 and may have to repeat it again because he is ill so often that he is hardly ever at school. Joshs episodes are quite severe, He vomits for hours at a time, whether or not he has eaten. This of course leads to esophageal bleeding and severe stomach cramping. Last night he strained his chest muscles so much that he thought he was having a heart attack, (he is 12 years old ). For two years we had to deal with people who thought that Josh was just trying to "scam" me so that he wouldn't have to go to school. I got sick of explaining to everyone that a child that vomits morning noon and night ,on any or every day of the week, is not doing it on purpose. When you wake up at 4am on easter sunday and your child is vomiting up blood and bile, you know that your ch ld is Not faking it. I have watched my sons health slowly decline and hate the fact that there is nothing I can do to help him. Medication does nothing for him. On a positive note, We are going to Hamiltons Mc Master Hospital on friday the 5th of June, Dr Issenman has just recieved permission to start a study on this disease and Joshua has been chosen to partissipate. They are trying to find out if there are any connections between the patients of this illness. On friday Josh will be having an EEG, this is to find out if there are similarities between these kids that the rest of us don't have. We will be finding out all the details when we get there and I will keep you all updated. Diana.

Mary - 05/30/98 14:47:34
My Email:bschills@aol.com
Do you or a family member suffer from CVS?: yes, my daughter, age 14
How did you find the 'Disease in Disguise' page?: I was just browsing for anything new on CVS

Comments:
My daughter has been suffering from CVS since she was 7 years old, she is now 14. Her episodes are on the long end of the spectrum. She typically misses two weeks of school anywhere from 2 to 3 times per year. We have tried many different meds through he years as well as IV therapy. Just this year we came across a regimen that has reduced her episodes down to 1-3 days!! She is admitted to the hospital and started on fluids, Zofran, and Zantac. After the loading dose of Zofran has been given, she is ept on a maintenance dose of Zofran. All the while she is receiving the Zantac. If the nausea doesn't completely disappear, then she is given Ativan (a sedative). This seems to be the magical drug for her. She returns from her "Concious Coma" state, b gins talking again, actually becomes our child again! She usually requires 2-3 doses of the Ativan, and then she can go home. Her last episode lasted 1 and a half days!! AMAZING!! Alot better than 2 weeks. The regimen we follow is in a peds journal ar icle written by Dr. Fleischer. If you want more info you may E-mail me anytime.

Sherry Roehl - 05/21/98 05:19:34
My Email:gnsroehl@flash.net
Do you or a family member suffer from CVS?: possibly daughter
How did you find the 'Disease in Disguise' page?: infoseek search

Comments:
Thank you for your site. Although it is discouraging not to find a "cure", it is helpful to find others out there who understand how hard it is to see your child go through this. My daughter was seen by a gastroentoroligist (sp?) today. She's had 4 episodes of unexplained, violent vomiting in the last year. (not as many as some, thankfully) She's only 3 1/2, and they started about a year ago. For 3 of the 4 episodes, she has re uired re-hydration therapy at the hospital, although she's never been admitted. Tomorrow, I have to make arrangements for an upper g.i. and an ultrasound for her. The dr. did find her liver slightly enlarged and tender, and wants to rule out other causes. But, CVS was his first guess. After reading how long it's taken others to fi d a diagnosis, I guess I am relieved that even if she does suffer from CVS, at least we got a diagnosis comparatively quickly. I'll let you know when we get the blood work and other test results back, if the diagnosis is indeed CVS. Thank you again, Sherry

donna harris - 05/12/98 03:30:49
My Email:JHarris624@aol.com
Do you or a family member suffer from CVS?: mother
How did you find the 'Disease in Disguise' page?: a friend

Comments:
You have helped when doctors only reoly there is nothing wrong with you.

Amanda - 05/06/98 17:15:27
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: by luck

Comments:
I'm glad to know I'm not the only one!

Peggy Huocey - 04/24/98 16:23:07
My Email:phatwhy@aol.com
Do you or a family member suffer from CVS?: daughter??
How did you find the 'Disease in Disguise' page?: from CVS digest

Comments:
Thanks for answering my digest question about my 17 year old. She isn't a textbook case of CVS so we are working with her doctors on some of this. We have tried some of the medications alone but not in combination are a little afreaid to mix them like J remy's list form October especially since she can't really keep much down. Also-- PS your link listed on your home page didn't directly link to your page, it brought me to the geocities home page and I went down a couple levels and found your wonderful age, Thanks...

Angie Fosmark - 04/23/98 22:03:57
My Email:mathison@juno.com
Do you or a family member suffer from CVS?: yes

Comments:
My 6 year-old daughter has been diagnosed with CVS. Her doctor seems to be out of ideas on how to help her. I want to find out if anyone with these symptoms has found causes or solutions for their vomiting episodes. I'd like to hear from you. Thanks.< r>
Linda Shoemaker - 04/23/98 03:10:06
My Email:lshoe@mindspring
Do you or a family member suffer from CVS?: 7 yr. old son
How did you find the 'Disease in Disguise' page?: through the CVS website

Comments:
He was just diagnosed yesterday and I have been reading everything I can on the internet about CVS. We have been dealing with his episodes since he was two. Never getting any answers and feeling completely alone. Now we know what it is maybe we can help o r son alittle more better. So many questions... I believe sharing our stories can shed some light on this disorder and help each other out. Thanks for the sight!

Sarah Willey - 04/07/98 21:04:16
Do you or a family member suffer from CVS?: I do
How did you find the 'Disease in Disguise' page?: CVS search

Comments:
I found this website and this is the first time I've heard of CVS. I'm confident that this is what I've been enduring over the last 1 1/2 years. I'm 21 years old and have been through all the tests. All normal. I can't find any answers, I hope that I a able to now find one.

Maureen - 04/07/98 20:45:26
My Email:MMAG705680@aol.com
Do you or a family member suffer from CVS?: !! year old son
How did you find the 'Disease in Disguise' page?: browsing

Comments:
I just purchased a computer and was so pleased to find info on CVS. We had felt so alone out here, never having heard of this disorder before. John has had it nearly 2 yrs. now, with 4 hospitalizations. It hasn't been easy.

Becky Ware - 04/01/98 03:09:40
My Email:wware@effingham.net
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: just by luck

Comments:
Joyce, I read your story concerning your son's illness and was very moved. My 10 year old daughter has been suffering symptoms similar to those describe by you and other vistors to your guestbook. We have been seeking treatment since this began 4 years go, at the age of 6. Early on one doctor in Champaign, Il treated her for what he refered to as abdomial migrains, but we had never heard of such a thing and after a few months moved on to Children's Hospital in St. Louis. Since then it has been a relen less pursit to find out what this is or at least how to treat it. There was a article in our local paper about CVS, which lead me to look for more information on the internet, where I came across your web page. Like others who have written to you, I cou d not believe the similarities. I would like to write to you again and plan on following up on your updates. Good Luck to you and your family, especialy your son.

Andrea Kilmer - 03/28/98 02:49:43
My Email:esgcpa@aol.com
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: link from cvs

Comments:
It's frustrating to think there is nothing we can do. My child was diagnosed today with CVS after 4 years of episodes- but only in thw spring, but violent for weeks at a time. He just turned 9 this month.

janine croskey - 03/27/98 19:58:42
My Email:.janine.croskey.k12.mi.us,internet
Do you or a family member suffer from CVS?: yes,15 daughter
How did you find the 'Disease in Disguise' page?: just searching

Comments:


Sandi - 03/27/98 16:37:04
My Email:sandra_hogan@watsonwyatt.com
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: Thru the CVS Associations' website

Comments:
I read Jeremy's story while on the internet at work, at my desk, yesterday and cried. I can't imagine yours and Jeremy's agony. His story scares me. My daughter (5 1/2) has not yet been diagnosed by doctors; although I have made the "diagnosis" myself. KNEW there was something very wrong about my daughter's vomiting episodes (3 years of them, and growing) and with no answers from doctors (they thought each time, it was a stomach virus, and once put her on an IV at the hospital), I went looking on the i ternet, and discovered CVS yesterday. She has every symptom described by you and the pamphlet. Hours and hours of vomiting every 20 minutes. Blood in her vomit. A fever. Once she had the severe stomach cramps at the end of an episode, for 3 days. And o ce she also had severe diarrea along with the vomiting. It's been a nightmare for my whole family. At this very time I am waiting to hear from my pediatrician to tell her of my discovery of this illness, and get a "diagnosis" and treatment. I'm scared, a d I have so many questions. I'm very thankful to you for this website and sharing Jeremy's story.

DeAnn Elkins - 03/27/98 02:36:37
My Email:ED25911@aol.com
Do you or a family member suffer from CVS?: 9 years old son, Lantz Vercher
How did you find the 'Disease in Disguise' page?: Well, Joyce, I got here by a contact from you earlier today. Lantz and Jeremy are really more alike than you realize. After reading Jeremy's webpage, it's frightening that anyone could come so clo e!

Comments:
Jeremy and Lantz are really very similar. I will be contacting you often, your story is like looking in the mirror and talking to myself. I realize it's just once you get past Lantz's original illness, but once Lantz started the vomiting you know my sto y from there, like I had told it myself! Thanks!

Nancy Hertz - 03/24/98 13:59:11
My Email:HertzTrek@aol.com
Do you or a family member suffer from CVS?: Rebecca age 10

Comments:
I love the page, greatwork.

Pam - 03/20/98 00:06:27
My URL:http://members.tripod.com/~danpam/index.html
My Email:pd11@webtv.net
Do you or a family member suffer from CVS?: NO
How did you find the 'Disease in Disguise' page?: SURFING THE NET

Comments:
You and your page is a blessing!

Sharon Suprun - 03/18/98 12:27:43
My Email:sasuprun@msn.com
Do you or a family member suffer from CVS?: it appears so
How did you find the 'Disease in Disguise' page?: Alta-Vista

Comments:
My daughter has been having "vomiting" symptoms severe enough for her to dehydrate since January. She has always had a "sensitive" stomach. Her doctors (with the exception of one) are content to determine that she has a psychological problem--however as soon as her FORMER peditrician describes this discease--my husband and I both knew we had found the answer. Your page is a Godsend. Thank you.

kim hurley - 03/03/98 14:34:29
My Email:surgtech@mtco.com
Do you or a family member suffer from CVS?: son
How did you find the 'Disease in Disguise' page?: AltaVista

Comments:
wyatt is 15 months old. he first got sick when he was 3 weeks old, after a day he became lethargic so I rushed him to the Dr. he was put in the hosp. for observation I was told to quit breastfeeding him because the milk was to rich for him to digest. aft r a week the vomiting stopped and we went home. But about every 6-8 weeks Wyatt was getting sick. Between Nov 96 and June 97 he was hospitalized 5 times. We tried Zantac 1mg and Propulsid, but after 6-8 weeks he was sick again. We were referred to a P diatric gastroenterologist in Peoria,Il. He diagnosed Wyatt with Heartburn, but when the vomiting persisted he did some research and finailly diagnosed wyatt with Cyclic Vomiting. He was put on Phenobarbital 1tsp at bedtime and 6.25mg phenargan supp. as needed for vomiting. Wyatt looks like a happy, healthy baby even when he is sick always active. We were told that he would outgrow this by age 2 I don't see that happening. He is so used to it by now that it doesn't phase him one bit. He stops long enou h to vomit then keeps right on going. He never seems to be in any pain. What scares me most is that this morning I went to get him up and he had vomited in his sleep, I'm afraid that he'll asperate in his sleep and die. If anybody can help please email s.

Stephen Blanch - 02/16/98 07:51:43
My Email:steveb@iaccess.com.au
Do you or a family member suffer from CVS?: daughter
How did you find the 'Disease in Disguise' page?: yahoo

Comments:
Zofran works well for Rebecca. We tried heaps of others,promethazine, stemetil,maxolon but Zofran does the trick (So Far!!!)

Lynne - 02/12/98 04:53:08
My Email:shortbich@aol.com
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: web searching

Comments:
My 13 year old son has been diagnos with cvs. We still havent been able to control it. The doctors are trying different meds. He is geting frustrated with it. He is affraid it will turn into something more serious.

bonnie - 02/11/98 18:26:15
My Email:bkahl@hotmail.com
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: search

Comments:
we have been dealing with this unknown illness for 18 months. it is a relief to know we are not alone.

bill & michelle verno - 02/09/98 02:07:11
My Email:carcrazee@aol.com
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: yahoo

Comments:
we have a ten year old son that has been dagnosed with cvs. this has been going on for almost 4 years now. It has been hell. I am glad to know there are these sites and help. You feel so alone when this is going on! thank you

Connie Wilson - 02/09/98 00:03:04
My Email:connie@bitstorm.net
Do you or a family member suffer from CVS?: Yes

Comments:
My heart breaks for Jeremy. My daughter (Alec) has suffered with cyclic vomiting since she was 9 months old. She just turned 8. Alec has visited Duke University, Chicago Children's Hospital, as well as, numerous other hospitals. None of which were able to tell me anything new. The doctor she was s eing in our hometown diagnosed her with cyclic vomiting and referred her to Duke, which in turn referred us to The Children's Hospital in Chicago. The doctor in Chicago prescribed medication for seizures... he only wanted to use that as a last resort. M only hope is someday we will have a cure! Connie Wilson

Traci - 02/04/98 22:43:55
My Email:crazy4my5g
Do you or a family member suffer from CVS?: yes my 5yo
How did you find the 'Disease in Disguise' page?: purely by accident

Comments:
I am so thankful for finding this i thought i was the only one dealing with this terrible thing that our 5 yo has and has had since she was born. I have only one other concern that NO one will answer that is she had really started this after her first dos of Polio. The doctor abruptly ended giving her this and she has never had it since yet I cant get an answer at all! Today is a new beginning for us reguarding this I wont go unanswered anymore! Also I am going to give this web site to my Doctor so he c n learn more on it. I am tired of having to explain to the Military doctors what it is! thanks for informing me more. Traci in Pensacola

Alicia - 01/27/98 14:13:22
Do you or a family member suffer from CVS?: daughter
How did you find the 'Disease in Disguise' page?: search-yahoo

Comments:
I hope your son says well! My daughter was diagnosed 2 years ago. Since then doctors changed their minds. Back to no answer while she gets slowly worse. Has been very very sick now for 7 months. severe abdominal pain , siezures, vomitting

lynne - 01/07/98 03:37:55
My Email:shortbich@aol.com
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: looking for info on disease

Comments:
i have a 13year old son diagnosed with cvs in Sept.

Nancy Brewer - 12/02/97 14:48:45
My Email:Nancy Brewer@etn.com
Do you or a family member suffer from CVS?: Yes
How did you find the 'Disease in Disguise' page?: Over Thanksgiving Dinner!

Comments:
I love your site! We left Decatur about noon on Sunday and Caleb was vomiting by the time we went to bed that night. He will probably be in the hospital by the end of the week. Nice to know we're not alone. Thanks for your support.

melissa moss - 11/19/97 19:49:04
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: looking through browsers

Comments:
My daughter was finally diagnosed that she has cyclic vomiting syndrome. It is such a relief to know that there are others out there that have this syndrome and that we are not the only ones who are going through this .

melissa moss - 11/19/97 19:46:04
Do you or a family member suffer from CVS?: yes
How did you find the 'Disease in Disguise' page?: looking through browsers

Comments:
My daughter was finally diagnosed that she has cyclic vomiting syndrome. It such a relief to know that their are others out there that are going through the same thing our family is. Hopefully there will start to be more info. on this out there for others to read about. Including myself.