Re: tics/PANDAS????Tourettes? (long!)

[Guest guest]

Hi,

My 13 year old daughter has OCD/ADHD/Tourettes, which all began when she

had a bad viral illness with extremely high fever and apparent nervous system

involvement when she was four. Her OCD was diagnosed first, then the ADHD and

when she was about 10, the Tourette's was diagnosed. Tourette's is a diagnosis

based on length and type of tics - whether your son feels the " need " to tic or

not is irrelevant. Children, in particular, tend to come up with a reason why

they have these tics. My daughter told me for a couple of years that the reason

she stretched her mouth was that her lips were dry or she had food on her mouth,

etc. It was only later that I learned that it was just a tic and she was kind of

trying to explain it to herself - or to describe the feeling of a tic as a child

perceives it. For a diagnosis of TS, tics have to be both motor and vocal, be

present multiple times throughout the day, and persist for more than a year

(that's my summary - check out Tourette

Syndrome Assoc. on the web and you'll learn more).

Whether your child actually has PANDAS or not does not affect the

treatment of his OCD, although it's useful to know because you would want to

jump on any possible symptoms of strep immediately to prevent a worsening of his

symptoms. Otherwise, knowing whether he has PANDAS or not doesn't make a huge

difference. Similarly, knowing that he has TS (or not) doesn't make a huge

difference unless the tics get so bad that he wants to try medication for them.

The important thing to know about tics is that he can not control them, so

drawing attention to them in any way is not helpful, and they may get much worse

before they get better. Unfortunately the early teen years are the worst for

tics, which usually get significantly better by the time the sufferer reaches

adulthood.

Of all my daughter's problems, it is the ADHD that causes us the most

problems. (We call it ADHD, but attention difficulties, impulsiveness and

learning problems are all part of Tourette's. It's just that most people have no

idea what Tourette's is about, and ADHD is familiar to everyone). Her OCD is

under control after years of CBT and medication, her tics are currently

non-existant (she takes Abilify for it and it works wonders for her), but she

continues to be very impulsive, absent-minded, disorganized, etc. She has

troubles in school, although she is extremely intelligent. The tics have always

been the most minor of her problems, although for her it can be major (at 13

everything is major!!).

Good luck with this. If you can find one, take your son to a child

psychiatrist or a neurologist for a good diagnosis. Even if you don't want to

treat the symptoms medically, it is helpful to get a diagnosis so you know what

you are dealing with and can educate yourself. There are some really good

websites to check out - Tourette Syndrome Associations has one and there is one

called Tourettesplus, I believe (I'd check it out for you but ironically we're

almost late for my daughter's child psych. appt!!). It's by Packer and is

full of useful info.

I apologize for the length of this. I hope it is somehow useful. Feel free

to ask questions if you have more.

Best wishes,

in NV