Many people with cerebral palsy have problems with oral health and finding understanding dentists. This page is set up as a place to record problems and (hopefully) some solutions. If you say where you are in your submission, that will help all of us.
Index:
Add your story: use this form select "oral health/dentist" as the option.
I have found:
The British Society for Diability and Oral Healthand
Special Care in Dentistry: a magazine "dedicated to the management and treatment of special-needs patients."
Tamar Raine writes on the cp_dystonia list:
An Open Letter to the Dental profession
by Tamar RaineI spent the last two years looking for a dentist I could work with. I have some special needs because Cerebral Palsy and Dystonia affect my ability to hold still, and Fibromyalgia makes the whole process very painful. I tried at least six dentists in the East Bay. Finally, I called an old friend of the family who taught dentistry at UCLA. He referred me to the dental schools at several Universities. When I called the first place, the person we spoke to had this reaction when told I had Cerebral Palsy; "Eww, what is THAT? What kind of person has that?" I looked at my assistant -- and she looked at me, and we hung up. The school has a lot of educating to do.
So, we called the next school, and they were fine with everything. At the first visit, they decided they needed to sedate me, so the Doctor wrote me a prescription for Valium. It was not enough, and I told him so. I had taken Valium most of my life up until 4 years ago. But he persisted. So I went back a couple of weeks later, and they tried to work on me again. But my gums were so sensitive that they decided they were going to have to do a full anesthesia which required I be admitted to a hospital. It looked like I was going to lose three or four front teeth.
We scheduled an appointment for February, then they called saying they had to reschedule, so I didn't go in until March first. When I woke up from the surgery, I was told that five teeth had been removed. Okay, I thought, that's too bad, but hopefully this will allow my mouth to heal.
In the meantime I got all kinds of advice from one of my personal care assistants who is going through a similar problem with her teeth. Her dentist talked to her, while mine said absolutely nothing about changing the way I clean my teeth, how I eat, etc. This entire thing has been like a wake-up call to me, and now I'm passing on what I've learned to others. I have changed a lot over the last three months, but my dentist wouldn't know about that, as he never bothered to check in with me about how I might improve and keep my gums and teeth healthy. It seems as though he just expects me to go on as before, that I can't learn from my mistakes. But I can, and I have. Most of us can when given the right information.
I assumed that when I had healed from the surgery the dentist would talk to me about dentures. Well, I finally went in for a post op visit, and I asked the dental student about a bridge, and the response I got shocked and astonished me.
He said, "Well, I don't think the doctor had planned for a bridge." I asked why not, and he sighed and said, "Well, I think it has to do with how tight your muscles are, it would make the bridge pop out all the time."
I said, "Well honey, I am not going without teeth, no-no-no-no-no. What about implants?"
He said something to the effect that I still had a large chewing area, and that implants would require they knock me out several more times, and they didn't want to do that because of the risks involved. By this time I was very angry, and I told him that I was not accepting a life without teeth, and that it is my right to try for some sort of dentures, and please have the Dr. call me. I never heard back from the dentist or his student. But I am not going away; I will not be put off. I will have teeth. I will not have The Look that conquers up so much negative stereotyping.
It's simply outrageous that dentists don't want to fit disabled people with dentures. They seem to think it's all right for those of us with Cerebral Palsy, Autism, and other developmental disabilities to go around with gaps in our mouths. It might have been an acceptable appearance forty years ago, but it is no longer acceptable to be stigmatized in this way. Whenever you look at a large group of people with developmental disabilities, there are always a high percentage of people with teeth missing, and crooked remaining teeth. The look has become part of the stereotype people have of us. We have enough prejudice against us, we don't need the added stigma of gaping mouths.
Maybe you don't know this, but we do have a social life, and we do have interests in dating and getting married. We exist in the community now, instead of being hidden away in back rooms or in closets. I know you'd Never Dare tell somebody like my sister or my helpers to go without teeth, so why is it acceptable for me to go without teeth? Also, if I were working, I wouldn't go without teeth. As it is, I AM looking for a job, all I need is more strikes against me because I don't have a professional appearance.
It might be true that a bridge would pop out on occasion, but it is not your decision to make. It's my mouth, my life, and I am the one to decide what's going to happen to my mouth. If a bridge doesn't work, then try implants, for Pete's sake! If I need to be put under anesthesia for this, then that's my decision to make, not yours. I'm aware of the risks.
When will people realize that people with disabilities need to look as good as their "typical able bodied" neighbors? When will you realize that you should let the client make decisions for themselves, and discuss these things honestly with us? When will you learn that people are individuals, and need to be regarded as such? Why didn't you discuss my options with me before the surgery?
The more I think about The Look, the angrier I become. I have already worked over half my life at improving my self esteem, the last thing that I need is The Look. Dentists have a responsibility to make people look BETTER, not worse. We don't need to perpetuate this stigma. And don't tell me that I don't need teeth! I've seen what happens over time with the remaining teeth. They get crooked and the bite changes for the worse, and the lips loose their muscle tone. Really, you should do for us, what you'd do for your own family. I think the dental profession had better update its practices, and do some soul searching.
A friend of mine has offered to do a disability awareness lecture at another dental school, and they have gratefully accepted her offer. I would be open to doing the same. Properly educating the dentists of tomorrow will go a long way to repair some of the damage done in the past. And hopefully, by more of us speaking on the needs of people with disabilities we can save more folks from needing to have teeth removed.
Jean from the cp_dystonia list writes:
Oooh, a mother called me about a month ago. Her son has CP and is mildly autistic. He's a sweet kid. He was having serious dental problems, so she went to three dentists. Finally she decided to allow one of them to do deep cleaning, rather than some of the more extreme treatments. They had general anesthesia. After the dentist completed the procedure he told her he'd changed his mind and extracted all the front teeth. ALL of them!!! From there it went downhill.
She called me, distraught, and I started calling people, all kinds of people, who had all kinds of experience. Then I started screening dentists, because I figured the mother had gone through enough. I will admit that I grilled the dentists pretty thoroughly. Finally I called her back and gave her two dentists to call, one of whom works with the people who live and work at The Lambs Farm in Libertyville, a privately endowed sheltered workshop, and a pediatric dentist who LIKES kids who are different. He invited the mother to bring her kid to visit, just to see if the boy could get comfortable there. No charge, no stress.
I've dealt with Northwestern University and the University of Illinois dental clinics in Chicago. Generally they are not well prepared to take anyone with a problem that is not standard. Their tendency is to be overly cautious, since they are both afraid of making a mistake with a patient and traumatizing a dental student. After all, if someone quits dental school in the final months of his training, it doesn't make the school look good.
I have a daughter who has had Cerebral Palsy since birth. Physically, she can get around. Mentally, she cannot speak, but only a few words,the rest is a jibberish language. She cannot write. She requires 24 hr. supervision. I help her dress,bathe,etc. Anyway,I have been searching for a dentist for her, for over two yrs. When she was under 18, It was easy. Now that she is older,no one wants to take her. All of a sudden,she is a risk. They take these kids,because they have so many programs that will pay for the dental work. I have used these programs in the past myself.I don't understand why it is so hard to get help now,and why she wasn't a risk back then??? Her front teeth are breaking off,and she cannot eat some of the foods she used to eat. I buy lots of banana's and pudding for her snacks. I have called every place I could,to get her in to see a dentist.Some had me bring her in,only to tell me they couldn't help,and then charged me $85.00. I did this a few times,and then I quit. I can't afford to pay that kind of money for them to tell me they cannot help me.I called every place I knew after that,and heard the same story over and over. I called one dentist's office,and the person that answered said:We don't see people like that! I thought what do you mean people like that. I couldn't believe my ears. And these people went to school?? Anyway I am still trying, and I will not give up, even if I have to take this problem to a higher level. Thanks for allowing me to share this. Becky.
I wish to share that, indeed, I've too had harsh, horrific times with obtainment of needed dentistry and being treated with respect, yet I've found that persistence has greatly paid off in positive ways. I just trekked onward, keeping an open mind and heart, full of as few grudges possible, and now have found a wonderfully great dentist by the name Dr. Neil McAneny in the state of Delaware. All to say, is but keep looking, and sooner or later, you'll find a dentist as neat and cool as Dr. McAneny. Best wishes to all.
I am currently a Nanny and Governess for five children. We reside in the Seattle metro area. The oldest child, a female who will be 15 years old in October has CP. I have great concerns for her oral health and would appreciate any information you could pass on to us. She is a typical teenager inside a body that restricts her future goals. However, her beautiful face and smile radiate her inward beauty. I want to help her to maintain her teeth in hopes of avoiding future dental problems.
contact nancy via email
Dr. Omar Miranda Bavines writes:
I`m a dentist in Mexico City, and I am giving attention to Joaquín. Joaquín is a 36 years old man with spastic CP and is my favorite patient because even though his parents tell me he can’t talk or can`t move his hands we can initiate some communication giving him attention like myself would want to receive in the same circumstances. He tries to talk with me: now he can say si (yes), ok, can move his hand, want to help me with the ejector, gives me a smile when the date is over and we progress in his prophylaxis, removing decays, dealing with an abscess and removing calculus.
But now I have to initiate the next step in the treatment, so Joaquín is going to need some prosthesis and I am asking for someone of you people that can connect me with another dentist that give you an option trying to save your teeth and not "sorry sir but the only thing that I can do is take off all teeth by prevention".
I know what to do but always it is better to talk to another in the same case or another that had resolved problems like those of you and your families.
Thanks.
Dr. Omar Miranda Bavines.
Casma 610 Lindavista. México.
55 86 26 17.
contact Dr. Bavines via email
I am a 40-year-old spastic CP who has not had a dental exam in ten years. The reason has less to do with my disability than it does the more practical consideration of money. I am having difficulty with one molar, and may well be developing problems with at least a dozen other teeth. I am on Social Security disability, and receive Medicare and Medicaid, which do not cover dental procedures. Services for indigent patients are not going to pay for any complex, involved, procedures (such as root canals) so my only choice is extraction. After ten years, I think I am going to need something more involved than a mere filling or cleaning.
I am a dental student at the university of Western Australia, Australia. At UWA students are exposed to treating many types of patients, including those with disabilites. Currently a friend of mine is doing endodontic treatment of a patient with cerebral palsy. As part of my dental psychology unit, we are learning to speak to patients and get a real understanding of not only their current dental problem, but also the life style problems associated with that dental problem. After reading some of the stories on this page, I just thought I would let people know that at UWA we are doing a RCT of this patient as well as restoring the tooth, because all patients have the right to appropriate dental treatment, irrespective of what conditions they may suffer from.
Shiva: if you see this let me know what an RCT is. My guess is Root Canal--pierre
My 13 year old son has quadriplegic spastic CP. We were luckly enough to find an excellent caring dentist who has done a great job with cleaning my son's teeth. I find if I give him .5 ativan 1 hour prior to the appointment., we do just fine.FYI: In many states (we're in FL) there is a program known as Medicaid waiver. They do pay for dental visits for adults, as well as DME and home modifications not covered by insurance.Check with your local welfare office. In FL it is called Children and Families through Developmental Services.
Ativan is the brand name for
Lorazepam:
Studies in healthy volunteers show that in single high doses Lorazepam has a tranquilizing action on the central nervous system with no appreciable effect on the respiratory or cardiovascular systems.
I assume ".5" is .5 mg.
Hi all,
I am 18 and have CP. I have noticed lately, when I brush, I get sores in my mouth, especially in my gums from places I've hit with my tooth brush. When I have them, they hurt very bad and they bleed like crazy when I brush until it heals in a few weeks or so. Is there anything I can do to make myself not jerk when I brush? I know it's because of my hitting those places and not my gums because I was just at the dentist and he said my gums were fine. Any help would be appreciated. Thanks!
email: email me.
Copied with permission from alt.support.cerebral-palsy
I am a 31 year old with mild CP. I have had a great progression of my symptoms since 1997. For example, I used to walk most of the time and only use a wheelchair for long distances, now I use the 'chair 98% of the time. I also have been experiencing more dental problems than ever before. I have found a wonderful dentist who does not care when my muscle spasms get horrible during an exam or proceedure. This was just the work of God, as this dentist has seen me since I was a child. He is perfectly fine with my spasms and other stuff, and now teases me, "where are you going, leg?" when my legs spasms and then falls off the chair.
He told me that the disablitity will never be a problem for him, that he does not care how bad it gets. He said he hates to see me deteriorate, but that he is only concerned with my teeth. I worked for a short time for a dentist who coincidently could not handle my spasms as an employee of theirs, so I could not imagine his response if I was a patient. Needless to say, I no longer work there, and he also never touched my teeth!
I am located in Northern VA and the dentist I go to is Dr. Robert Flikeid, located in Warrenton, VA.
Hope this helps someone out there!
An Update July 7, 2002
I actually fell last week while trying to transfer from the dental chair to my wheelchair. I got what I refer to as a "2 by 4" spasm (meaning leg becomes stiff as a board) and while Dr. Flikeid was helping me into my chair, he then had to catch me as I started to fall. I became very embarrassed but he was super about it all. I apologized all over myself and he repeatedly told me it was OK. I gave him a HUGE hug and thanked him again as I left. I also told him about this site and others and he gave me his email address to email him the links. I did so, and he again stated in the email that he was glad to help. So, great dentists are out there. Just keep looking, and if you are in my area, call Dr. Flikeid.
Tracey: the form doesnt tell me your e-mail. I hope you see this to know it IS OK to update.
I have a 9 yr. old daughter with spastic quadriplegia cerebral palsy (also has low tone mixed with this). She goes to a dentist here in Long Beach, California who was recommended by her old pediatrician. He used to clean her teeth in the office, but now she fusses so much and is so spastic that we have to save this for whenever she goes to the hospital for outpatient work by her dentist. He xrays and cleans her teeth, pulls any baby teeth he deems necessary to come out, puts crowns or fillings on all at the same time. This has been done three times now.
I worry about her having to wait two to three years between cleanings as she has so much saliva, which of course causes a lot of plaque. We brush her teeth in the morning and evening, though she eats via a G-tube.
She also bites her cheeks severely, we think it starts when she is cutting new molars. In November of 2001 she started cutting her 6 year molars, and started biting her cheeks terribly (we think it began because she had no other way to teethe). She is now on a medication called zanaflex to control her spastic muscle movements. It helps, but the biting has not stopped. The only other suggestion made to us was to try Botox injections every three months in her jaw muscles.
Does anyone out there have experience with the biting problem?
Thanks!
Hazel McClellan
From the Editor: I use a Braun electric toothbursh which makes it easier for me to do a good job when I brush my teeth. (This doesn't help you, but I also get my teeth cleaned every 3 months).
I am very fortunate in the respect of having a dentist that can work with me despite the fact that I have CP. My advice to those who are in need of dental care and are looking for a dentist that will work with those who have CP and/or other disabilities is to ask their local Cerebral Palsy association for a list of dentists in their area that have experience working on individuals with disabilities. Another place where they can ask is through their local hospital physican refferal service. It's worth a try
Copyright © Pierre Malraison, Tamar Raine
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