Newly dx 8 year old.

[Guest guest]

Hi Everyone,

I am new to this forum, and I hope I am posting appropriately and in the right

place. I apologize if this gets long. I am hoping for advice and shared

experiences, as this is all new to us.

My daughter is a very complex kid, she has had a litany of dx in her short 8

years, but at age 6, we felt we had an excellent evaluation that really hit the

nail on the head and dx her combination type ADHD. We chose to medicate and my

daughter was on Adderall XR, first 5, then 10 mg. We also chose to take weekend

and summer drug vacations. It was a wonder drug for her, very few side effects,

and great results - she was a different kid. In September 2011, we started the

medication again in preparation for the school year. After about two weeks we

noticed a mouth twitch. We thought it was a tic and ended up stopping the

medication, hoping the tic would go away. It didn't. We started Intuniv

(guanfacine) hoping it would help both the tic and the ADHD symptoms. (It

hasn't) We also started to see and notice other behaviors. I.E. rubbing feet &

hands together, playing with hair, touching teeth, walking in circles, not

stepping on cracks (this we had seen previously, but had gone away on its own a

year earlier), cracking knuckles, sort of clicking her feet together as she

walks, and finally, touching both sides of her body. For example, if she

touches her right knee, she will then touch her left knee. If she bumps the

right side of her mouth with her spoon, she needs to touch the left side. Her

main symptom, though, is her mouth. She sort of sucks in air and moves her jaw

around. It's a very unnerving, pretty constant habit.

She is very articulate about it all. She explains that she doesn't know how or

why it started, but that she needs to do all of those things or else her body

doesn't feel equal. She also realizes that it is silly, says she can't control

it, and that if she tries to stop it or hold off for awhile it " starts to feel

like an emergency " .

We now believe this is OCD rather than a tic, and despite medication (taking 1

mg Intuniv, and 10 mg Celexa) it seems to be getting worse.

So I guess my questions are:

-Do you agree this is OCD and not a tic?

-What should we do about it?

-Should we ignore it or try to discourage it?

-Do you think this was triggered by ADHD stimulant medication?

I'm just so frustrated and want to fix this for my daughter. She is not a

typically anxious child, and only says she feels anxious that people are going

to see her " mouth thing " and think that she is weird.

Any advice or information would be great. We are seeing a great Integrative,

Developmental pediatrician. He has recommended CBT therapy, but his office

isn't taking new clients for that. We are going to see him again on Tuesday and

hopefully he will have someone else to recommend. Hard to believe this has been

going on for two months and we haven't made any progress! Rather, it seems

things are getting worse.

Oh, and we did have her tested for PANDAS.

The test results, we were told, were negative.

ANTI-streptomycin results : 464

DnASE D antibody : 255

Where do we go from here? Is this going to be permanant? Thanks so much if

you've made it this far, Nanci