After a long period of silence this is news about J..
J's doctor for metabolism diseases gave us the advice to change J,'s medication.
On the one hand he gets more arginine, creatine and glycine (0.5g more each).
On the other hand we have started an attempt with Strattera (Atomoxetin).
Even though there (of course) are no experiences with Strattera and the creatine transport deficiency, J's doctor hopes that J's very short attention spans become longer and he can learn things better.
Right now we are watching him very closely as Strattera can have strong side effects.
We realize that he follows things better and tries things out. We can lead him better in the Affolter way.
Just 2 little examples:
Yesterday evening he helped me cooking and cutting vegetables. He has not done anything like that for longer before. And last weekend he watched a little kids dvd. Even though it is not our goal to make him watch TV this was a step for him as he has not followed TV for longer before. This could mean his cognition is changing.
If those little steps are because of the new medication of just contigency time will tell.
Please cross your fingers for J and us that it will help.
If you think about such a medication for your kid please contact us by mail to get more information.
Hi, just wondering how J is making out on the Strattera since you posted this. Any more improvements noted?
ReplyDeleteHi there, I am a mom of a 2.5 yr old boy with the same disease, on a similar treatment, was interested in finding out more about your situation. My first time using a site like this, so i.m not really sure how to go about this... But am very interested in talking with you My name is Janet!
ReplyDeleteHi the 2 of you,
ReplyDeleteI am sorry for not having answered p.'s Comment but last year in the early April J got a baby sister and since then I was completely occupied being pregnant and caring for J and the baby.
In the beginning we saw a really big change: J could focus on puzzles and books much longer than before. After a while the effect faded. Then we changed to a higher dosis.
After that he was again more focussed. But unfortunately he seems to be very tired (maybe an adverce reaction).
Next week we will see a doctor again and ask him what to do.