Hello

[Guest guest]

Hello to all our new group members. I am sorry it has taken me so long to

welcome you. I had a crazy week last week and was hardly able to keep up

with the posts. - I have also posted some very, very long messages.

Trust me when I say no one has ever seemed to mind. Your incredible

strength and sense of humor comes through on your posts. They will both

help you get through this. Bill - Welcome, you've found the right group of

people to help you get through the day and to help you find answers. Very

warm, caring and accepting. Jodie -Welcome and so sorry to hear about your

little girl. You have also found the right home for many, many of the

questions that you have now and that will come up in the future.

My name is Cari and my 5 year old son, , was dx with Juvenile

Dermatomyositis at the age of 2 years, 11 months. The disease hit him hard

and quick. Woke up one morning fussing about bending his legs and 3 weeks

later was unable to move at all. 2 1/2 years later he shows no physical

signs of having this disease except for a little bit of the facial rash that

comes and goes with heat, exercise etc... It has been a long road but a

happy ending is in sight. He started out with Solumedrol Infusions and

after taking Prednisone for 28 months is now only taking 100 mg of plaqunil

every other day. He is very strong and strong willed. Never complains or

gives us a clue of when he is in any pain or discomfort and the people on

this site have been his voice for which I will be forever grateful. 's

Dr. has come to trust my " internet friends " .

started Kindergarten this year and is keeping up just fine. I was

bragging two weeks ago about how well he was doing and then last week was

home Tues. with diahreah and vomiting and then again on Thurs with vomiting.

He bounces back so quickly! Or, maybe it's just that he's so used to

feeling yucky and caring on. He is learning some vocabulary words on flash

cards and we add a few more each day. Last night we finally had enough to

put a sentence together. When he read all the words individually and then

read them all together and they made sense I saw the light go on!!! " I'm

reading! " It was amazing. I was blessed enough to be with all 3 of the

kids when they read for the first time and they really got " it " . Brought me

the chills all 3 times.

's hip pain dx is finally in. It seems that a very small number of

children with JDMS get a " lingering Arthritis " towards the end of the

disease. I was very glad to hear her use the words " at the end " of the

disease. She had to post his symptoms on a Juvenile Rheumotology Dr. site

and she got 4 responses and was able to talk to a Dr. who had a patient with

this over the phone. No one can say how long it will last. As of this Nov.

it will be a year since he first started complaining about it and who knows

how long it bothered him since he has to be in a lot of pain before he will

say anything. Yesterday he was walking with the left foot pointed outward.

This arthritis will pass and isn't degenerative, so we will go from here

with positive thoughts.

Vicki - I am worried about you. Maybe you should of gone to the ER. Let us

know how you are doing today.

- Did your Dr. not write you a note for work or isn't it worth it.

I worry about you and those long hours. Hang in there.

Ann-Marie - Only 6 possible problem kids? What will you do with all those

good kids. You won't know how to act. I know you will work magic with the

problem ones. How is your friends kitty doing?

Annette - Always glad to hear your positive thoughts you post to us all.

Teddi - We are still working on getting to the conference. I want to go to

meet you and Vicki more then I want to hear what the specialists have to

say! Keep your fingers crossed.

Mike - Always look forward to your posts. Always make me laugh out loud.

- So glad you asked everyone to post their history's again. I am

always amazed at the strength of the people on this site.

Teeth - has had a few cavities and even had to have a crown put on one

of his teeth. He gets them cleaned every 6 months but one cavity was so

small that we let it go, with the Dentists blessing, for a little while. So

many doctors visits for the kids so the Dentist said let's not put him

through anymore until the cavity needs to be taken care of. Don't know if

the problems were regular kid stuff or because of the the Prednisone.

See , mine are long sometimes too!

Everyone take care and a happy Tuesday.

Hugs,

Cari

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