Re: newbie -- sorry for the long intro

[Guest guest]

Hi , and welcome to the group! Yes your daughter's history sounds a lot

like that of many of the kids here. I'm just a Mom of a child with OCD and

tics, and not a doctor...my thought after reading your post is Tourette's,

due mostly to the fact that your child describes an " itchiness " in her

fingers/brain and that she has to do the motions, and when she refrains for

awhile, she does the motions more. This is pretty typical description of

the sensation of needing to tic, and the result of a child suppressing tics

for a while but then having to let them go. Also there is sometimes a

behavior component to TS, a problem with " urge " feelings.

A high percentage of children with TS may have OCD as well, so the

pediatricians may also be correct in their assessment. It can be difficult

to tell a tic from a compulsion. Compulsions are done to relieve anxiety

from a sticky bad thought, say, where tics are usually in response to an

unpleasant sensation in the body part that is relieved by doing the tic.

This is similar to the sensation a person gets, which is relieved by

sneezing.

My suggestion is that you take your daughter to an experienced child

psychiatrist for assessment, diagnosis and treatment. That you have her on

tape is helpful since frequently children can and will control their tics or

OCD behaviors in the doctor's office! Both OCD and TS/tics can be treated

with medication, and OCD can be treated with a certain type of behavior

therapy, Exposure and Response Prevention.

The neurologist hasn't been particularly helpful and the school personnel

are off-target. It's pretty common for teachers and other adults around

children who do compulsions or tic, to see the behavior as willful and under

their control if only they would. There is a book about TS entitled " Stop

It " due I'm sure to the fact that kids with tics are often told to just stop

their tics and other disorder-related behaviors, which of course they would

do in a heartbeat if they could.

Take care,

Kathy R. in Indiana

----- Original Message -----

> (sorry this is long,but I've had this problem for a long time and am

> devoting some time to try and find some answers). There is OCD in

> here, so please read it through.

>

> Hi, my name is and I need some advice regarding my 6-1/2 year

> old daughter. When she was six months old, every time she got

> excited, she would extend her arms, twist and bend her wrists, throw

> her hands out and shake them really bad (you'd have to see what I

> mean, but I'm doing my best to explain it). Her face would also

> distort. Back then, my husband and I asked the docs about it, but it

> was dismissed -- she'll grow out of it, they said.

>

> Last year, I asked my pediatrician for a referral to a pediatric

> neurologist, who saw on the video camera a very bad episode of hers

> (again AT THE TIME IT WAS only when she gets excited or is playing

> computer or reading out loud). He said " It's bad, but she'll grow out

> of it. " He didn't say she had tourettes or anything in particular,

> but just that she had an overproduction of dopamine and since it only

> happens when she is excited, he wasn't too concerned.

>

> I left there feeling happy it wasn't serious, but concerned that

> nothing was being done to control it. He said if it's not better

> within a year to bring her back. I'm close to a year with that and

> over the last few months, I noticed she added a new thing, she has to

> flick her thumb up against her pointer finger on both hands over and

> over. I can't even hold her hand and walk with her without her doing

> it every few seconds. Her fingers are blistered and calloused. Over

> the last two or three weeks, she's added biting her finger...when I

> ask her why she does that she says it's itchy " inside " (the reason

> she claims why she does the flicking) and that she " has to, has to,

> has to " do it. I try not to look at everything, but the last week,

> she HAS TO have her bed absolutely FLAT. That's only been a few days,

> so I'm just watching that one.

>

> We talked about this because I started getting concerned that her

> shaking (and now the flicking) was getting worse, not better. The

> teacher told me that she is doing it a little in class (the shaking)

> and that she is rocking a lot ( I think she does this to surpress the

> arm shaking) but the other kids don't see it so it's not an issue in

> that way.

>

> The teachers/school psychologists, etc. think it's a behaviorial

> thing that she can control with a " key word " if she wanted to. Well,

> after trying some experiments with my daughter, I'm convinced it's

> not something she can control. I've also been dealing with the

> shaking for almost SEVEN years! I tried to get her to stop flicking

> and after about 1 minute she was pulling her hand so hard away from

> me so she could do it. I asked her if she can stop and she says no. I

> asked her how her hands felt when she didn't do it and she says she

> has a " funny feeling " in her finger when she doesn't do it. I asked

> her to read something w/o shaking and she did for the most part, but

> when I asked her how did she feel she said, " Like my brain was

> shaking. " In other words, her brain was telling her to keep doing it

> even though she supressed it. Once the time was up, she did it twice

> as much.

>

> Sami is an amazing child, but she's started to have behaviorial

> issues in school and at home (things that are pretty typical for a

> six year old, but make me wonder if it's part of this). She's been

> fresh in school at times, but we've talked about this. The teacher

> claims that she doesn't see a connection with the behavior and the

> shaking or the flicking. two pediatricians have told me that the

> flicking is DEFINITELY OCD. i'm going to go back to the neurologist

> after in March but I'm not sure what else I'm dealing with.

>

> Does this sound like anyone here? I've been told it might be " a mild

> form of tourettes " " stims " " OCD " " ADD " but no one will confirm one or

> hte other. I just want answers, so I know what I'm dealing with. Any

> suggestions/advice would be greatly appreciated. Thanks so much.

>

[Guest guest]

>

Hey ,

> > Hi, my name is and I need some advice regarding my 6-1/2 year

> > old daughter. When she was six months old, every time she got

> > excited, she would extend her arms, twist and bend her wrists, throw

> > her hands out and shake them really bad (you'd have to see what I

> > mean, but I'm doing my best to explain it). Her face would also

> > distort. Back then, my husband and I asked the docs about it, but it

> > was dismissed -- she'll grow out of it, they said.

> >

> > Last year, I asked my pediatrician for a referral to a pediatric

> > neurologist, who saw on the video camera a very bad episode of hers

> > (again AT THE TIME IT WAS only when she gets excited or is playing

> > computer or reading out loud). He said " It's bad, but she'll grow out

> > of it. " He didn't say she had tourettes or anything in particular,

> > but just that she had an overproduction of dopamine and since it only

> > happens when she is excited, he wasn't too concerned.

Did he actually do an EEG and check for seizures? " It's bad, but

she'll grow out of it " What's bad? Can you call him back, or request

your charts and see what he called it? If nothing else, he had to come

up with some type of diagnostic code in order to bill your insurance.

> >

> > The teachers/school psychologists, etc. think it's a behaviorial

> > thing that she can control with a " key word " if she wanted to. Well,

> > after trying some experiments with my daughter, I'm convinced it's

> > not something she can control. I've also been dealing with the

> > shaking for almost SEVEN years! I tried to get her to stop flicking

> > and after about 1 minute she was pulling her hand so hard away from

> > me so she could do it. I asked her if she can stop and she says no. I

> > asked her how her hands felt when she didn't do it and she says she

> > has a " funny feeling " in her finger when she doesn't do it. I asked

> > her to read something w/o shaking and she did for the most part, but

> > when I asked her how did she feel she said, " Like my brain was

> > shaking. " In other words, her brain was telling her to keep doing it

> > even though she supressed it. Once the time was up, she did it twice

> > as much.

> >

> > Sami is an amazing child, but she's started to have behaviorial

> > issues in school and at home (things that are pretty typical for a

> > six year old, but make me wonder if it's part of this). She's been

> > fresh in school at times, but we've talked about this. The teacher

> > claims that she doesn't see a connection with the behavior and the

> > shaking or the flicking. two pediatricians have told me that the

> > flicking is DEFINITELY OCD. i'm going to go back to the neurologist

> > after in March but I'm not sure what else I'm dealing with.

> >

You have hints of a lot of different disorders. I'm a special

education teacher (with a son with PANDAS) and it does sound a little

like TS or OCD. It also sounds a little like Asperger's Syndrome.

(since you mentioned stims, I'm assuming you've considered that

possibility as well).

Sometimes the school psychologist and special education staff have some

inklings of what they think, but can't/won't say because they can't

diagnose. You could try to pin them down a bit more. Sometimes, they

are just plain old clueless!!!

We've been working with a kid for years who finally got an Asperger's

diagnosis, but his most obvious symptoms are his obsessive behaviors

and the tic-like stims he has. (They sound a lot like your daughters

which is what made me think of it). He also has a lot of other

symptoms, but you have to spend a bit more time with him to pick up on

them. How are your daughter's social interactions? What type of

behavioral issues is she having?

No matter what the case: If they are stims, compulsions, or tics, there

is nothing to be gained by calling attention to them or " punishing "

them. There are treatments available for all 3, however, so it really

is important to get a firm diagnosis.

IMO, it might be worth your while to contact your state Autism society

and find a doctor who is really up on Asperger's and other Autistic

Spectrum Disorders. It's been my experience that those doctors also

see a lot of kids with tics and OCD and can differentiate. I've not

really found the reverse to be true (like I said, my experience). I've

seen a number of doctors (pediatricians, neurologists, even

psychiatrists) who will see the activity level, or the " stims " or the

obsessive thoughts, or the compulsions and jump all over them without

looking at the big picture.

Unfortunately, your situation isn't all that unique. I was reading a

statistic recently. I don't remember the exact details, but it told how

many different " specialists " the typical parent of a child with a

neuropsychiatric disability has to see before getting a correct

diagnosis. It was truly depressing.

Jeanne

jwestpha@...

NBCT - Exceptional Needs (2000)

[Guest guest]

, I know that you have gotten some good advice from the people on site

here. I think your daughter is lucky to have you for an advocate. You are on

the right track and I hope you'll keep us posted. Kelley in NV

[Guest guest]

Wow, thanks so much for the response. Ironically, my best friend's

daughter has bad tourettes and she sees it too, but nobody will

confirm it for us. Thanks for referring me to use a child

psychiatrist. I have thought about that, but was hesitant, but now I

will. It's so hard and I'm pissed at the school for even suggesting

she can stop if she wants to. If that was the case, she would've

stopped YEARS ago!

I'll keep you posted. I feel comfortable here. Thanks!

lisa