ocd

January 26, 2005

Medication helps. Sometimes I just have to make myself pull myself together

and act normal.

Kay

Re: ocd

>

> This is what I picture with Aubrie. Right now, she's little, cute, and

> young so people take those things in stride. It's common for young

> children to be unreasonable. But as she gets older, it's going to get

> in the way of things. Even if it's " mild " , it can have huge effects.

> Think of the annoying people in your life and in your community who are

> just " odd " -- no one wants to be around them. They may not have

> anything diagnosable, but they have a mild personality problem or

> something that makes them not easily accepted socially.

>

> And then those things must have an impact on a person's success. If

> they can't let go of something in a conversation, they probably can't

> let go of things in their own thinking. Meaning they can't finish a

> complex thought process if they get " stuck " somewhere in the middle.

> Even if that doesn't happen all the time, if it even happens one time a

> week, it can have a huge impact. A person can't just loose it once a

> week at work.

>

> This worries me and frustrates me. I can imagine that it will be hard

> to get Aubrie the help she needs because of this being relatively mild

> for her, but mild can mean huge in real life. Especially when combined

> with everything else she's dealing with.

>

> Michele W

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

January 26, 2005

Thank you Kay for all of your responses to this topic. As I have

posted before, my son deals with this and it is a big problem, however, with

the right behavior plan AND medications combined, is functioning on

an extremely high level now and is pleasant to be around. When he needs an

adjustment, he will begin with aggressive behavior, and he will tell me he

can't stop it, he must do it first, then apologizes over an over for the

behavior. He has told me the medicine has made him well. Freaky. He is

only 7.

, Timmy reminds me so much of . Medications are not a permanent

fix, but they do improve everyone's quality of life I would say, by 90 %,

you would have a whole new kid. no longer repeats but that is

because of the Wellbutrin, nothing else would stop it. It literally takes

over their life and they can't do much beyond it. I was not a believer of

behavior meds until I saw the difference, a 1/80 turnaround. He can

socialize with kids his own age now, his academics are great, focus and

attention are unbelievable, his teacher's tell me he is their " star "

student, he scored above age level on the NJ ASK tests last year. Without

those meds none of that would have been achieved.

Debbie

Re: ocd

I'm so glad he gets a 1 on 1 aid. Yeah! That will really help. No I don't

think I repeated too many things over and over but things go through my mind

over and over. Its maddening! LOL

Kay

Re: ocd

>>

>> >

>> > Did you begin any meds as a child? Did the OCD begin as a child?

>> >

>> > Michele

>> >

>> > Kay Lynd wrote:

>> >

>> >> Hi ,

>> >>

>> >> I take Zoloft for my OCD. It keeps it fairly well in check except when

> my

>> >> stress levels are really high, then its harder to cope.

>> >>

>> >> Kay

>> >

January 27, 2005

Hi this is my first time writig. I too have a son that has charge. He

is soon to be 17 yrs. old on March 12. There isnt a thing in the world

I would do for hm. I love him so much. The reason for writing is he has

ocd real bad, He

takes risperdal, lexapro,benzatrpine, and coumadin for his heart. He

just stared taking lexapro, ben and risperdal about a year ago.

HIs only med was coumadin until then. Does any on know if these are the

best combination for ocd. Yes I have asked the Drs and really not sure

they know everything. Another ? My son

go to a school for the Deaf and I was wondering i that is the right

place. What kind of school do all use? Any information would be

helpful.

Thanks Amy Mother of

January 27, 2005

Hi, Amy!

My daughter is only 7 so I'm behind you quite a bit. We are just now

considering seeing a dr about ocd issues. My daughter is in our

neighborhood school, in the regular classroom with a 1:1 aide. She

wears hearing aids and uses an FM system. Without her aids, she hears

enough to function, but the aids help tremendously too. Her vision is

bad in one eye, but near normal in the other. She talks and hears well

enough to manage in the regular community. We did playgroup at the

school for the deaf when she was an infant and learned sign before we

knew if she'd be able to talk and hear.

I know the parents of older CHARGErs will help you out. I just wanted

to welcome you to the group. I look forward to learning more about you

and .

Michele W

mom to Aubrie (CHARGE) 7 yrs and 13 yrs

>

January 27, 2005

Michele,

Thanks for writing back. It would be interesting to hear what other

doctors say about ocd, and what meds are best. My son is totally deaf,

but we are considering the coculaer implant.( not sure of spellling). We

are considering it for saftey issues more than anything.

was born with breathing problems

But we didnt find out he had charge syndrome until he was about 18

months old. ( also other problems at at birth). I think it took so long

because there wasnt much information about it. He was born with a cleft

pallet,ear deformed (RT), heart problems (aortic stenosis), he has a

artificial aortic valve, he had a G-Tube until he was about 7 yrs. old.

Today he can eat a whole PIZZA by himself.Proudly...He had ear surgery

but it doesnt look any better then before he had it. He wears glasses

and can see fine with them on. Everything is blurrie without them. He

is

very near sighted. He uses sign language very well,hes very good in

math, he reads very well,doesnt always comprhend everything well,only if

he re-reads it,I try to encourage him to be as independent as possible.

Look forward to hearing from you Amy

January 27, 2005

Today he can eat a whole PIZZA by himself.Proudly

Way to go . I can just see him eating his pizza.

We are all trying to learn more about the OCD and other behavioral aspects

of CHARGE. Stay tuned to this site, as information as published we hear

about it here, which really helps to have these resources to share with our

doctors.

On school, the best place is so individualized. It sounds like is

doing well where he is, being able to communicate and have relationships

with peers, to be able to read and do math, sound awesome. How is your

school on focusing on skills needed when he is an adult? What else would he

gain from public school that he does not have at his current school? What

would he lose by switching?

Best of luck,

Kim L

> Today he can eat a whole PIZZA by himself.Proudly

January 27, 2005

Kim,

I have asked myself all of those same questions.. He get what they call

career prep... He has worked in the school store as cashier, in the

printig room,doing copies-booklets as teachers need, he s currently in

the store again

but this time working on the book work and computer managing the money.

His problem is he bores easily and I think at times his ocd kicks in.

My problem is the school he goes to I dont believe there up to date on

charge kids

and all the problems. Also he is away at school all week and comes home

on the weekends.

I was wondering what other kinds of schhols there are out there. thanks

for your help Amy

January 27, 2005

Hi Amy,

My son is 7.5 and suffers terribly from OCD. It started around age 5 when

he would start to constantly ask " what comes next " . By age 6 it was

unbearable. He also has anxiety/mood disorder. We use Wellbutrin for the

anxiety/checking behavior and Depakote which was originally started for

abdominal migraines, but now we use it to control his oh so wonderful mood

swings. Hope this helps.

Question for you: How did you get your son off the tube at age 7?

Currently working at that now.

Debbie Matasker mom to 7.5 w/CHARGE, 10, andra 5