Tourettes Syndrome

[shoee]

Hi, my 11 year old son was recently diagnosed with Tourette's (along with depression and a learning disability with concepts). I have noticed tics since he was about 6 but didn't seek help until it became verbal. The neurologist just started him on topamax to help with the tics and depression. Thursday will be a week. We have to increase the dosage by 25 mgs a week until we reach 200 mgs. I have read other message boards about this medication and really don't know how I feel, it seems the side effects can be worse than the tics.
So far no change, but either it's not in his system yet or the dosage is not yet high enough.
My first suggestion to anyone who has a child with tourette's is to educate the child's teacher(s). I did not do this early enough to prevent my child from being belittled by his teacher in front of the whole class, thus making his tics even worse for a period of time, not to mention he hates school now because of the attention she drew to him.
I would really like to hear what other parents of children with tourette's have went through and more info on OCD. Everyone I encounter has no clue what tourette's is, so I have no one to talk with or get advise from (on what to expect in general).

[This message has been edited by shoee (edited 06-10-2003).]

[This message has been edited by shoee (edited 06-10-2003).]

[Lisaleesa]

This is my 2nd try, I am going to send this before typing my msg to make certain my user name is recognized. More to come..

Okay that seemed to work. I am so glad to have found this site. I have an 11-year old that has a sniffling, snorting tic that is almost constant. I have long suspected Tourettes, but have been told by my doctor, they are merely growing pains and totally normal, by his psychiatrist that Adderal would be helpful, 2 days later I decided that was untrue as they actually became worse. I am at a loss as to what to do. He is entering Jr. High this year and I am so afraid of how this behavior will affect his interactions with both students and teachers. I am looking for suggestions, please! Medical websites or meds that actually help with the tics would be very welcome. He is currently taking Zoloft for depression, I do not know if this effects the tics one way or the other. I would greatly appreciate any infomation or suggestions that others that have experienced this may have to offer. I anxiously await any replies. Thanks for your time.

[This message has been edited by Lisaleesa (edited 07-21-2003).]

[mhmanor]

I know how frustrating it can be when medical people are not helpful. One of the contraindications of Adderall is Tourettes syndrome because it is a CNS (central nervous system) stimulant so it tends to exacerbate motor and phonic tics. Have you seen a Pediatric Neurologist for a diagnosis? Verbal or phonic tics is what it sounds like your son may be exibiting. How long have you noticed them? Does he do any type muscular jerking movements? Symptoms like constant sniffling and snorting, unless your child has severe allergies, is NOT common in childhood. Don't let any doctor tell you that is "NORMAL". The best thing to do for your child is get a clinical diagnosis from a ped. neur., then you will be able to give the teachers a name for why your child does what he is doing. Especially if it is disruptive to a class. If the teacher can understand that your child can not help that anymore than he can control blinking or swallowing for long periods of time, then maybe they will be understanding. Educate yourself and your child on tourettes. If he is diagnosed with TS, don't be surprised if you don't start to notice other symptoms. Hope this is helpful. Above all, teach your child that God made him just the way he is and God has a special plan for his life!!

[allisok]

I understand what you guys are going through. My son started ticing at about 5. Also has add.
He is now 13 and doing very well in Junior high.
He takes 1/2 mg tenex in the morning and 1/2 in the evening for the tics and Adderall for his add. He is off meds for the summer.
I thought the same thing, how is my son going to function in school with his peers. Will they be cruel? I spent many nights lying awake thinking about this.
When I first found out that my little boy had tourettes it devistated me. I tried to stop him from doing it. The more I tried to stop him the more he would do it.
As I learned more about it the less I would focus on it the less he would tic. The meds helped drastically to the point where I don't notice tics anymore.
Tics came and gone over the years, from eye blinking to throat clearing etc.
One very very important thing that all of you should know about. I had meeting with the school board and requested section 504. Section 504 is used for children with any disabilty to have the right to succeed in school with children without disablilities, without being held against him in any way. It could mean extra teacher prompting, longer time taken on tests if needed, If needed test could be taken in a quieter setting, the list goes on.
Remember with the help of medication, your child will be healthier emotionally because he is able to fit in with his peers and not feel different. With the help of section 504 there is extra assitance for getting a good education.
I wish you all the best of luck, your child will be fine with the proper medication and schooling and support from you.

[Lisaleesa]

Thanks for your replies! No, my son has not seen a ped. neurologist, we will make that our next step in the medical portion of this. I am certain he has Tourettes. He has gone through the throat clearing, hand sniffing, tounge clicking, eye blinking, etc. Each time a new tic appears the other disappears. And yes, I am certain that they are vocal/phonic tics. Although the hand sniffing falls into another category of tics, labled as simple motor. I am also wondering if you would mind describing the side effects of the Tenex and how your son has responded to it. I am glad to hear that is has worked so well for him, and allowed him to focus on school and building friendships. I hope to be able to find something for my son that will allow him to do the same. Thanks again!