He was diagnosed at 4 and 1/2. At that time we did 3 months of ACTH. After that, we had to start Prednisone. He responded very well. Over the last three...
Hi, My son was diagnosed at age 3 and a half, he has just turned 7. We tried the Prednisolone after his diagnosis, and this cleared his EEG. As we reduced the...
When I was in the school for kids with aphasia, I was ages at 9 thr. 14, they didn't use sign language. There were about 7 kids with one teacher and one aid....
Sam, I feel our neurologist is just playing a guessing game with meds for Kyra. First we tried Klonopin, she was on that for 5 mos, and continued to have...
Terry, Since she is so young and having feeding problems anyway, you might want to look into the ketogenic diet. (It worked for my daughter for a year and a...
My son Gage was diagnosed at age 4. And since then he has been on three different medicatios that have not worked. First we started on Valium, the effect on...
Terry - The prednisone was our miracle. My daughter, Hannah was on pred at age 7 (She is now 10)for about 9 months ( Iwanted it longer) it has worked for her...
Jenn, Since Kyra started the Klonopin for the LKS she stopped eating. She stopped asking for food, stopped asking for something to drink. We stopped the...
Hi Terry, My 9yo son has CSWS and it is only in the past 3 years he has been eating and drinking "normally"; since he has been on steroids and is able to...
My dear friends~ My 10 year old daughter just started her period and her pediatric doctor wants to give her Depo-Provera Shots to stop her period. Have any of...
Gina, My daughter just got her first shot and had no side effects. Her cycles were so terrible, irregular, heavy and too long. They told me that Depakote and...
Hey everyone! :) Porcelain has still been seizure free and we're 1/2 way through the wean down on Prednisone. Here's something slightly odd we're noticing...
I've been on Depo for YEARS! In fact the only times I got pregnant is when I was told I had to go back on the pill for a year, my period was all out of whack,...
Andrea - We weaned that same way after a while. Hannah took 40 mg every other day for 1 month then 30mg every other day for one month then 20 every other day...
ihave had the worst weekend ever ethan was trying tohit me with a golf club, it took several neighbours to help me to get it off him without getting hurt. his...
Hi Martha! Thanks for letting me know how they did it with Hannah! Did you notice any changes in her attitude for one day to the next? On the 40 mg days she is...
Andrea - Do they have a plan to give her another med as she weans the pred? We simultaneously worked her up to dose on lamictal as we weaned the prednisone....
Martha- She's currently on Depakote right now as well, she's been on it since October. We had tried Lamictal from December until April with horrible side...
ethan is on 15ml epilum x 2 daily and 54mg concerta daily. we also work closely with a behaviour manager, but it all seems useless, now respite is stopped...
My daughter also has LKS, is 4 1/2 and when she was on high doses of Prednisolone, she too became violent, impulsive, exceptionally hard to manage. After...
ethan is 10 and he speaks very well especially swear words. I look after him fulltime, i am his grandmother and often struggle. have mentioned rispiridone to...
I'D LIKE THIS BACK IF IT APPLIES A little girl went to her bedroom and pulled a glass jelly jar from its hiding place in the closet She poured the change out...
Hi everyone! Well the neuro got back to us and we've lowered her B day morning dose of prednisone. Soooo currently on A days she takes 5mg in the morning and...
Very interesting article from Yahoo Health News. GINA LONDON - British hospitals are banning neckties, long sleeves and jewelry for doctors — and their...
Hi all, Just a short update on Tai. Last month he came off the Hydrocortisone after 2 and a half years and a very long, slow wean. We got the results yesterday...
Hi Sam, Am thrilled to hear the good news. Great to see you have posted on the other yahoo sites too; fantastic news must be shared! Please stay in touch, your...
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