Fragile X kids and ADHD meds...?

Fragile X Syndrome
#1

Our daughter has been formally diagnosed as ADHD-Inattentive as of this spring. We have been trying different meds since LAST spring to find the right ‘fit’ for her. She is 12 and was diagnosed with Fragile X when she was about 2 or so. Last spring her IEP team heavily suggested we get her evaluated for ADHD-so that is the condensed history of how she came to be on the meds.

I was wondering if anyone out there had a similar story with their own child? Were meds helpful or not and which ones have you tried? She responded very well to a generic dextroanphetamine, but got ‘anxious’ when we upped the dosage, so the psychiatrist prescribed a dexmethylphenidate, which so far has been AWFUL this week. I use the chemical name because we have a Medicare insurance and we don’t get the name brand…although we did try Concerta and there was no difference one way or the other…

Just looking for some advice or wanted to get others opinions from their own personal experiences… Also wondering about side effects that your child experienced form the meds…

Thanks so much!!

#2

Children with Fragile X tend to have anxiety disorders. I wonder if treating that would have mor eof a positive affect than treating ADHD and is it truly ADHD or the sensory integration disorder which is not treated with medicine at all but a very very active sensory diet. My son gets prozac for his anxiety and has a very active sensory diet. Hope this helps.

Mary

lunacopia fragilex-cpt5002@lists.careplace.com wrote:

#3

Children with Fragile X tend to have anxiety disorders. I wonder if treating that would have mor eof a positive affect than treating ADHD and is it truly ADHD or the sensory integration disorder which is not treated with medicine at all but a very very active sensory diet. My son gets prozac for his anxiety and has a very active sensory diet. Hope this helps.

Mary

lunacopia fragilex-cpt5002@lists.careplace.com wrote:

#4

Hi I have a son who is 7 years old. We had him diagnosed about a year and a half ago. I put him on Adderal (a ADHD med) first and did not tell the schools. After a couple months I went to the school and asked how they thought Devon was doing they said they could tell something was different but on the one day he was really anxious and would cry alot during school. That one day was the day I did not give him his meds. So that was a testimony in itself that the meds were helping him. Now he is on the Daytrana patch. Which is working so far so good. I switched him beause the initial kick of the adderall was pretty hard on him but after awile he was better again. I din not like to see him when the med would first kick in so now with the patch it is more of a gradual kick in and it does not affect him as extreme. I do not like giving my child meds in fact I was refusing for a few years but now that he is taking them and the schools have noticed a great improvement I realize he needs them. I hope this can be encouraging to you in whatever decision you make. God Bless! Anita

#5

My son is on catapres and it seems to have toned him down some what but it doesen’t help with the anger out burst or the sucide talk.> Date: Wed, 4 Jul 2007 02:28:05 -0400> To: Brenrose27@hotmail.com> From: fragilex-cpt5002@lists.careplace.com> Subject: Re: [fragilex] Fragile X kids and ADHD meds…??> >

#6

My 7 1/2 year old son has been on Adderall XR for about a year now and it has worked wonders for his ADHD. We are now trying an additional medication for anxiety–if it doesn’t work the Dr. suggests a medication for hyper-arrousal. We’ll see how it goes.

#7

Hello everyone!

Sorry you have to get this email but we’re moving and you know how organized AT&T is, right? We’ll be back online September 20th. Take care, God bless and hugs to all of you…

The Nichols’ Clan.

#8

To: brenrose27@hotmail.com> From: fragilex-cpt5002@lists.careplace.com> Subject: Re: [fragilex] Fragile X kids and ADHD meds…??> Date: Mon, 17 Sep 2007 00:47:48 -0400> >