THURSDAY OCT. 16, 2003
Well last night my 9 year old son was
diagnosed with Juvenile Onset Dermatomyositis. Today I know more about this RARE
disease than I ever wanted to.
To begin, it started back in Aug. of 03.
We had attended a family wedding and Ian had been swimming in a local lake at
the reception (the party was a grand outdoor affair) So when I saw Ian a few days later with
pink/purple eyelids and bags under his eyes. I wrote it off to the lake
swimming, and the late hours of the wedding weekend.
On Aug 16, 03 I brought my younger son to
the pediatrician for his yearly physical. While I was there I had the doctor
take a look at Ian.
The doctor thought it might be some sort
of infection and prescribed antibiotic eye drops. Things were back to business
as usual. We did the family vacation, and the boys went back to school.
The eye drops had seemed to lessen the red
and sometimes puffy eyelids. But it KEPT COMING BACK. His teachers were concerned, and so was I.
But I had been chastised in front of my younger son at the
On
Dr Laura is very nice, she checks Ian
over, (not knowing what she was looking for I watch her do the strength tests
on his arms and legs) She has a few ideas. She thinks it could be allergies,
and sends us out with a mittful of Zyrtec, to see if
that will help. But also suggests we have some blood tests done to rule out a
few things. She gives me the paperwork
to go downstairs to the lab. As we get in the elevator I notice the word STAT at the bottom of the sheet. This I know is not a good thing.
We arrive at the lab & are taken right in. Ian is a trooper. This is his 1st time (that he remembers) that he has had blood drawn like they do to the grown ups. He cries, squeezes my hand and viola! It’s over. GREAT JOB !! I tell him, he does better than I do. I can't watch at all when they do that. He looked while they were taking the blood.
Ok that’s over and we head home, we hit one of the favorite spots for dinner. Wendy's. We also stop at Big W (Wal-Mart) and pick up Dylan (lil bro) a new backpack for school. a few NASCAR goodies for Mom, and a new Transformer for Ian.
We arrive home and it's time to do
homework even tho it is already
It is the Dr. (I think oh shit, late call
this is oh so NOT GOOD)
This is when I discover there is a disease called Dermatomyositis
and Ian has it. It is a very RARE disease. It
is an auto immune disease, and what happens is his immune system doesn't know
to shut off. It starts attacking the muscles and skin of the body. Derma -for skin, and Myo
for muscles. The skin part is why he has puffy red eyes. This is where it shows up 1st. Since these muscles are
under the most daily stress. There can be rashes on elbows, knees, and it
causes weakness in the muscles.
Only about 3 kids in a million get it. It
normally is found in 7 year old girls, not 9 year old boys. Gee I knew he was
special but this is RIDICULOUS! Ya know. I just couldn’t win the freaking
lottery????? I’d have better odds at that!
Ok now what???? Dr Laura tells me that she
will make an appointment for us at the Rheumatologist at Children’s
Hospital in
I am up half the night scouring the
internet for what little information I can find. I call Ian‘s dad (he is at work) and
tell him what I know. I go back to searching
the web pages and I told dad what I found and I will leave him a copy on the
counter for him to look at when he gets home.
The real site to check out is JULIA’S DIARY.
Posted by her dad. She was diagnosed with Dermatomyositis in March of 1998
and is currently off all medication.(has been for a year and a half) Now I see there’s a light at the end of
the tunnel. I also show links here to the other pages Julia’s DAD has
made, I can not even attempt to be as thorough as he has been in his research.
I head to bed, exhausted but slightly better
informed and a whole lot more worried.
Shoot ahead here to this morning
It is 1030am and crazy mom can't
wait any longer (I get to work at 0400 so 1030 to me is late afternoon). I call
the office and get a LAURA (not the doctor but merely an office clerk, it
shows) she is absolutely clueless.” Dr Laura is off, I don't
understand her notes. The Dr will be in tomorrow. You can call back
then.” Oh No, I say I would like some information NOW! I ask if someone can call The Dr. at home and
let me know if I need to make the appt. or is she doing it? “I'll ask my office manager to take
care of it.” Fine. Next question what are the actual numbers from his
blood work? GEE clueless can’t
tell me that either.
Dr Laura calls me a 1045am - I hear you’re
upset. Yep, she can tell I have been on the Internet. TMI (too much
information) She did not want to alarm me in case she is wrong. So she did not
tell me all the stuff I found on the internet last night. She is trying to get
us in w/ Dr. K. @ Children’s Hospital in
Ian may make it that long but I won't I
tell her. She is working on it and will call me back later today. I did ask
about Ian's blood work. His CPK count is what was the give away. His should be about
100, it is 516.
After Dad heads to work we have a typical
afternoon. Homework - Dinner and a lot of goofing around. Ian & I talk
about his diet. He has to eat better, less sugar etc. He try’s to be
brave, but I push him to let it out. He finally admits he's nervous. I tell him
I am too. "I don't
FEEL sick." He tells me through the tears. “I know buddy-but we want to keep it
that way.” Is all I can tell him.
I call Keith and relay the info then off to
PC for a mindless video game. My mother in law calls we talk for about an hour.
About Ian and how we are ALL going to handle this thing.
|
|
CPK |
Aldolase |
vonWill |
LDH |
AST |
ALT |
|
10/15 |
516 |
|
|
|
|
|
|
NORM |
4-175 |
3.0-12 |
5.0-150 |
110-295 |
2.0-40 |
3.0-30 |
Things
kinda on "normal" schedule. I am off to work. I am expecting a call from
the Rheumatology Dept. at Children's. The cell phone is attached to me where
ever I go.
0945am Tracey calls to schedule the appointment Ian
will be seeing Dr K & Dr S @ Children’s Hospital.
SATURDAY OCT. 18 2003
Got home from work to find Mom in law here, she needed to be near HER lil boy and her grandkids. (don’t blame her there one bit) Keith and I went & finished the Xmas shopping, Ma stayed with the boys.
Did get some bad news from Ma. Ian can't climb the door frame like he
used to. ( we own a basic raised ranch, and in the hallway using the door jams
from the master bedroom and the 3rd bedroom Ian used to be able to
using just his own strength, shinny up the door jams and bump his head on the
ceiling. Now he can’t even He was amazingly strong with his arms. He has
lost some of that. Thanks to this
f*@&ing disease.
TUESDAY OCT. 21, 2003
I've been watching Ian since Wednesday (the day of the diagnosis.) I HAVE noticed he seems frailer. Could be just me worrying tho.
When I picked him up at school today. We have a routine Dentist appointment to go to. He was outside at recess. I watched for awhile. He never did do any running. Even when I called him from across the field, he came to me slowly. He gets into the car like an old man. I ask if he's ok. But yep is the only answer I get.
After reading a bit more of JULIA’S
DIARY I shoot off an email to her Dad, just to say thank you for posting all
the information that he has. It helped a lot and gave me hope that maybe we can
make it with out any hospitalization.
WEDNESDAY OCT 22, 2003
0830 put Dylan on the bus for school &
jump into the car & head for
The traffic is horrendous. It takes us
over an hour and a half to do what usually takes 45 minutes. We are JUST around
the corner @ 1000 I call to let them know.
We arrive and are taken in for height,
weight, BP etc. Then it’s off to the exam room to wait, and wait. While
we wait, I check my email. I have a response from
Julia’s dad. He says in hindsight, he wishes that they had admitted Julia
for the IV treatments with Prednisone at the onset of the disease. It would
have knocked it down faster, and shortened the recover time. OK I see your
point but how do I tell that to my always healthy 9 yr old??? I know that this
would knock us both for a loop, since Ian is RARELY sick enough to warrant even
a trip to the pediatrician.
We are seen by Dr Susan and we go thru a
whole bunch of questions, she examines Ian, his arms, legs, muscle strength
etc, and then she checks Ian's fingers VERY thoroughly.
Not sure how long it all took. But WAY
more time than I am used to. It’s usually “any problems”
“nope” Ok see you next year.
She pushes, she pulls, stand up, sit down,
has he had any allergies. Out of the country, any aches and pains. Have we
noticed any weakness? Not weakness per say but, a quietness, not his usual
bouncy self.
Dr Susan has enough information and heads
out to confer with another Dr.S. They BOTH return, Dr
S2 goes over Ian thoroughly - he is quick efficient & to the point. He
tells us that only 1 pediatrician in 1000 would catch this disease at the early
stage it has been found. OK I owe that lady a HUG!! He agrees
with Dr Susan about the diagnosis. They step out to discuss the treatment
course to pursue.
They
return and tell us Ian will have to be admitted. My whole world just fell in. I
start to cry which causes Ian to cry. (Great mom stress out in front of him,
I’m sure that helps the situation.) The
email from Julia’s dad that I have JUST finished reading flashes thru my
mind, OK this is still a good thing as my stomach is in knots
Dr Susan tells us to go downstairs to get
something to eat (it’s 11:30am) but just in case, bring it back to the
waiting room to eat it, in case the places she is calling to squeeze us in for
tests, have openings “right now”.
Ok we get some food and return, while we
are eating Ian asks about what is going to happen. I tell him not sure about
what tests, but we get to the part where he has to STAY. Oh that didn’t go
so well. I tell him I will NOT leave him alone, not to worry. Mom is here as
long as he is. He of course gives up on eating once he learns that. (I
couldn’t eat much either)
I call work and tell them that I
won’t be back until at least Monday, and even that may be iffy, depending
on where Ian is.
My husband calls his mother, who had gone
to our house to be there when our younger son gets home from school. Ok the
outside life has just been put on hold. Ian is the center of the universe for a
while.
Dr Susan returns and gives us the Laundry
List of places we have to go. 1st stop X-ray. They want to check his
neck muscles, since he couldn’t pick JUST his head up off the table when
asked to in the exam room.
While in the x-ray waiting room, someone from MRI (our 2nd stop) comes in looking for us. “We have an opening as soon as you get done here” she tells me. “Ok great, we’ll be down as soon as we are done.”
We are called into the X-ray room. OK this is a snap. He is good for the petite
nice looking tech and she then offers to x ray his stuffed rabbit “Floppy”.
He thinks this is just great. And
she even will give him the x-ray to keep.
We then go back to the waiting room to
make sure everything turns out fine. They say OK and hand Ian his own copy of
Floppy’s x-ray. Ya can’t get much better than that to entertain a
kid J
Next stop MRI, I have to take all my tech
stuff out of my pockets, Palm Pilot, Cell Phone etc. can’t mess with the
magnet.
Ian is told to remove his pants (no steel
allowed and Haynes underwear if he uses that brand. We check no Haynes.
–It seemed Haynes uses a metallic thread that messes up the results)
The tech explains the machine is VERY LOUD
and gives us both earplugs. I get them in and Ian is OK with the going into
the tube thing. The part that was the
problem was the holding still for four and a half minutes at one whack. Try
that yourself.
He does 3 maybe 4 of these things at various
spots on Ian and various time lengths. I stand near his head and hold his hand.
I try to talk to him but with the ear plugs I can’t hear him.
I ditch the earplugs and find this thing
is QUIET in comparison to the place I work on a daily basis. I guess everything
is relative. I then talk to him through the whole thing and while we are in
getting this done, Dad has gone off to the admitting office to take care of the
paperwork and so there are no more stops before heading up to “the
room”
We
finish in MRI and head to Floor 8E to be assigned to a room.
It is now
The food comes up and of course Mr. Picky
does not like it. :::grin::: Dad heads off to the café to get him something
else.
We meet a plethora of Dr’s, Nurses
and Interns. One intern in particular is very interested in Ian. Her name is
Joyce and she is from the DC area. She asks TONS of questions, she is learning,
and has asked if we mind all the questions. “NOT
AT ALL” I tell her. If we can help the
next family thru this disease we want to help for sure!!! She tests Ian
all kinds of ways and even teaches us a few of the Cranial nerves, so as to let
Ian have some fun with all the poking and prodding, pushing and pulling he has
gone through today.
She also started a conversation with Ian
about his Yu-gi-Oh Cards. She knows how to play “Magic” and it is
sort of the same. And she plays a few rounds with him,(better her than me, I
just can’t follow all the rules) after getting her butt whipped by a very
enamored little boy, Joyce heads off with all her new knowledge with the
promise of thinking of another question in 10 minutes and coming back to ask
more. She is great to have around. And says she will be there all night, if we
need anything to let her know.
Not sure of the time but they finally come
in to draw the blood and put in the IV thing. This does NOT go well. Ian is
frantic. Yelling at me and the nurses that he does not want this to happen, he
is NOT sick. etc. I don’t know who is crying more, him or me. It takes not
one but two tries to get the thing in. They take the blood for the lab work and
then leave the IV hook up.
I am told that with this thing in he will
not need to be “stuck” again, since
they can get the labs out of this thing when they need them.(this later turns
out to be a great big LIE)
The night nurse Jay checks in with us
around 730 and tells me he will be back with sheets etc for me.
Dad then gets the list of things that we
need from home, just as we are told we need to go BACK down to X-ray. They
found something on the MRI on his left leg, and want to take a plain x-ray of
it so they can double check it. Dad walks us down to X-ray and then heads for
home. I think was around
This is going to be a long week for Dad.
Since Mom has meds at home that she needs he is going to go collect the items
and be back by
Joyce has been back a few times, to
Ian’s (and my) delight. Jay returns and brings me sheets and even makes
up my “bed” for me. We get settled down and Ian and Joyce are at
yet another game of cards. (she does keep an eye on the nurse’s desk just
in case anyone is looking for her -our
room is right across from the nurses station)
It was probably around
This thing was sooooo
funny, Jay has Ian all hooked up and starts the readings, to get an error
message, and then again, duh- would help if we plug the leads INTO the machine.
LOLOLOL. Then with the right readings the thing fails to print, go figure. OK
he runs off to get another machine, we finally get the test done and he says we
can go back to our room to get the leads off. These things are STUCK but good,
they have to be soaked off with a warm facecloth.
Ahhhh lights out
for the night, I think it is
During the night some time Ian almost
punches a nurse.. it was really quite funny. You know you never get any REST in
a hospital, there is always someone in and out of the rooms, doing tests,
checking vitals etc etc etc.
Well Ian was laying on his right side, and LOOKED like he was asleep, the nurse
tried to take his temp with that ear thing. He had no idea what was up with
this thing being stuck in his ear and scared the nurse half to death when he
sat up. At least we are finding things to laugh at.
|
|
CPK or CK |
Aldolase |
Von Will |
LDH |
AST |
ALT |
|
10/22 |
504 |
15.3 |
221 |
527 |
58 |
25 |
|
NORM |
4-175 |
3.0-12 |
5.0-150 |
110-295 |
2.0-40 |
3.0-30 |
Results of labs upon entry to hospital
THURSDAY OCT 23RD, 2003
We wake up early, about 530 am I think, Dad arrives with the essentials at 6. He goes downstairs to pick up a breakfast and coffee. Ian orders French toast for breakfast… he thinks this is great, TV in bed, call for food, it is delivered, if it weren’t for the IV it would be heaven.
Dad hangs out with us until, about 0815. and then heads off to school, he has a few things to do and
will return around
A whole lot of NOTHING happened
today…we did mostly waiting around. I ran downstairs to the CVS to pick
up a few things, when I got back Ian said he had, had his swallowing test.
(this disease if left long enough can even effect swallowing muscles) He
checked out fine on that
We play a few games and watch TV, Joyce
stops by a few times to check on us. The nurse on duty for the day mentions
that Ian will need to have labs drawn, Thinking they can use the IV thing, to
me it’s no big deal.
Phlebotomy arrives around
Ian’s nurse comes in and asks why I
don’t want the labs drawn? That’s not it, I tell her, but the
Dr’s told me that they could be done through the IV thing, and now it is
a no. (guess they meant just the 1st time when they put the thing
in) Ian had been managing to eat
something up until this discussion and then he was done, no eating, no
drinking, just tears.
Joyce hears about the problems with Ian
and shows up with an alternative idea, we can use EMLA, which is a cream
that they spread on the area to be stuck about an hour prior to the stick and
this will numb the area so that it will be easier to tolerate the needle.
Neither he nor I are crazy about the idea of getting stuck again, but they
leave us no choice.
We wait, and wait no one comes. I ask
again. In the meantime Ian wants to go downstairs to the miniature train
display they are having in the entertainment center on the 1st
floor. They are only there until 3.
I locate the nurse and tell her that Ian
has been waiting for the EMLA
and that he wants to go see the trains, and they are only there till 3. If they
want they lab samples they had better get the EMLA, because it is
Off to see the trains we go. They are
filling the room, the pond scene is nice but we LOVED the autumn scene with the
covered bridge.
We return to the floor around
Joyce helps us out here, around
So the duty nurse and Joyce start, Ian is
VERY worked up, not sure who was more upset, him or me. Well things go FAIRLY smoothly,
except the duty nurse says something about MORE blood work, BEFORE they are
even done with THIS one. Man did she get a look! TMI (To Much Information) is
NOT what Ian needs. I will tell him what he needs to know thank you, which I am
sure is a WHOLE lot more than I was told when I was a kid in the hospital.
We are sent down for PFT’s or
Breathing tests @ 4:00 pm this lasts about an hour…and is non invasive so
Ian has no problem with it. When we return there is a note from Joyce that she
has gone home to practice and that she will be back to duel him tomorrow.
We get back to the room and somewhere
around
They get the IV going and Ian is hungry, so
I scoot down to the snack room and use the Microwave to make up some Kraft Easy
Mac. (he is sooooo picky, so far we have not found
much that he likes on the hospital menu)
Ian says the IV stings and they bring him
hot packs to help. After another little while he is still complaining about it,
so they add fluid to the Med so that it is not so concentrated. They also call
down to the Pharmacy to let them know that tomorrows dose needs to be diluted.
Dad arrives about
The
IV finishes up around 9:30., we are all up until about
FRIDAY OCTOBER 24TH, 2003
1st thing at the start of her
shift, our favorite Intern Joyce checks in with us. She says she will be back
later to duel Ian.
This is pretty much another do nothing
day, but only because we have to wait a certain amount of time before they can
give Ian another treatment of the steroids. Dr W is in again to see us. Seems
she is the lucky soul that got to stay home while the rest of the Rheumatology
Dept. went to a conference for the weekend.
Dr W says we should get the 2nd
treatment started a bit earlier today so that it doesn’t go till
Ian and I take a walk down to the Activities
room and he plays a few computer games and with some of the toys that are
there. They have a few rolling TV’s with video games attached and I ask
if we can borrow one. Yep, as soon as she can she will bring it down to the
room.
Someone from Physical Therapy shows up and
checks Ian over. They stretch him out and give me a few things to do with him
when we get home. He says he will see us again tomorrow and give us a plan to
take home with us. Asks about how we would like to handle his Physical Therapy,
obviously coming back to
During one of our walks Ian had noticed
a machine that rents movies on the 1st floor. So I head off to the
machine to rent Kangaroo Jack. We spend the afternoon watching this.
Dad arrived early today with his lil
brother, and it only took 3 or 4 minutes for the two of them to start sniping
at each other LOLOL. Gee Ian didn’t you miss your lil brother?? We head
down to the activities room again so Ian can show it to his brother. Ian has
seemed very subdued today, he keeps telling me he is fine, but something is
bothering him.
His IV is started about
They return somewhere around
Around
Joyce
has on her street clothes, she has taken time out of what little time Interns
get off to spend it
with Ian, and play the game she promised him. (She is going to
make one hell of a Doctor some day) I never did get any contact information for
her outside of the hospital.…..Joyce if you
ever read this. Please e-mail me, Ian really wants to let you know how he is
doing.
SATURDAY OCTOBER 25TH, 2003
Wonderful news now I just need to make sure the nurse on duty for the
day is right on it. Normally the nurses check in within the 1st few
minutes of their shift, and if not the nurse before them will at least tell you
the name of the next nurse. Neither of these things happened this morning.
I
calmly wait until
Someone comes over the intercom, “Can I
help you?” I explain AGAIN that I
am waiting for Ian’s Meds to be started and I having been looking for his
nurse since
Ahhhhhh Nurse A shows at
When she comes back the best she will do is
The IV is started at
Ian needs to have his vitals checked every 15 minutes while this thing
is going on so they wire him up again, heart monitor, BP cup, oxygen thing on
his finger and we are ready to roll. This didn’t bother me at the time,
but I have since looked back on it and really can’t believe it. Around
So
It seems the Dr’s are debating what
dosage of Methotrexate to give him, and until they do that we can’t
leave. Oh well, the whole family ahs since arrived and the boys head off to the
activity room. Mom stays behind and packs. (wishful thinking) I finish and head
to the activity room to. Around
We are given 2 prescriptions, the phone numbers of PT and where to call to
schedule a follow up visit and we are outta here. The traffic isn’t too
bad. We get home around
I am happy to have my son HOME!!!
Results of
Last labs at hospital
|
|
CPK or CK |
Aldolase |
Von
Will |
LDH |
AST |
ALT |
|
10/22 |
504 |
15.3 |
221 |
527 |
58 |
25 |
|
10/25 |
130 |
15.3 |
170 |
489 |
37 |
25 |
|
NORM |
4-175 |
3.0-12 |
5.0-150 |
110-295 |
2.0-40 |
3.0-30 |
CURRENT MEDS
|
PREDNISONE |
ZANTEC |
|
25 mg Twice Daily |
75 mg Twice Daily |
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I did have a call from the local visiting
nurse association, (set up by the Physical Therapist at the hospital) but since
Ian was back at school they would
NOT treat him (plus the fact the Physical Therapist only works until
WEDNESDAY
OCTOBER 29TH, 2003
DOSAGE CHANGE – 30MG TO 50MG PER DAY
I called to make a follow up visit at
0939-I was left on hold 11min. when I did speak to the receptionist She said
the 1st available would be Monday Dec. 15th. Oh no..... that is NOT soon
enough. I leave a message for an Anna and head off to school.
Dr K called me today around 1130. I was at
school and the cell couldn’t be reached. I called her back around
Since
we go for EVERYTHING perfect, we need to adjust his medication.” She wants to go up on the prednisone from
30mg per day to 50mg per day. She also will have
someone call me to set up and appointment for the middle of next week.
I also spoke to Dr Laura, she called just
to check on Ian and ask if I had anything she could help with. I relayed the
story about the visiting nurse fiasco and the fact that they would NOT come to
the house to treat Ian and I had no idea what needed to be done. I
couldn’t even remember the therapist’s name that came to see Ian at
the hospital. I gave Dr. Laura the phone number I had and she took care of the
rest.
She called Children’s, managed to connect with the PT and got the script that was required. She then called a local PT place and faxed them the prescription. Then she called me back and told me the name address and phone number and to call them and get him set up. HOW DID I GET SO LUCKY TO FIND THIS WOMAN???
She had me all set up within an hour. She
also said if at some point Ian just needed blood work, we could go to her
office and do it rather than go all the way to
I called and set up the appt. for Monday @
400 pm. finally something went smoothly
THURSDAY OCTOBER 30TH, 2003
NOTE Ian says his LEFT knee hurts sometimes
FRIDAY OCTOBER 31ST, 2003 ~~~~~~~~~~~~~~~~HALLOWEEN
I
am STILL waiting for a call back to set up an appointment, so I leave Dr. Laura
a voice mail around 0945am and ask if she can call Children’s and find
out what is the story. Since I don’t want to find out Monday that the
appointment is say Tuesday.
I arrive home around
Then within the next half hour I receive ANOTHER call from Children’s. This is the person Dr. Laura got a hold of, after my voice mail. I thanked her but let her know that we are all set.
God I LOVE that Dr. Laura!!!!!
Ok the kids arrive home from school and it’s off to the local mall to TRICK OR TREAT. Just what they need sugar. Ohhhhh well. Here we are all dressed to head out for the local Mall.
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Dad as Morphius |
Dylan as a Cowboy |
Ian as Yu-Gi-Oh |
Mom as Marilyn |
When
we get back from that there is a message on my machine from YUP Dr. Laura, she
tells me someone WILL be getting a hold of me, the appointment will be on
Wednesday, but she is not sure what time. And if I need any more help to just
call, “I hope Trick or Treating was fun she tells us.” J
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JUNE 04 |
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