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Old 02-09-2003, 09:36 PM   #1
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Post Tourettes Syndrome

I have a 10 yr old son diagnosed with Tourettes Syndrome. The neurologist said it is a common illness, but I am a nurse and in 14 yrs, i haven't seen a patient with Tourettes. I would love to talk to other parents with Tourettes children.

 
Old 02-11-2003, 10:30 AM   #2
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M -

My cousin has Tourette's Syndrome, he is 20 now and was diagnosed FINALLY when he was 17!! All those years the Dr's had been pumping him full of Ridalin and telling my aunt and Uncle that he was ADHD and had defiance disorder, it wasn't until he started to "tick" that they finally took him to a specialist out of town and they helped him. He is on some meds and therapies and the change is tremendous. If only someone would have figured it out sooner.

Samantha

 
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Old 05-13-2003, 12:30 PM   #3
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Quote:
Originally posted by mhmanor:
I have a 10 yr old son diagnosed with Tourettes Syndrome. The neurologist said it is a common illness, but I am a nurse and in 14 yrs, i haven't seen a patient with Tourettes. I would love to talk to other parents with Tourettes children.
Hello, so happy to see your post. my son who is also 10 was just diagnosed today with ADHD, OCD and tourettes Syndrome. Just wondering how you have been coping and if you have had any success with any meds. What have you learned so far about this disease?

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[This message has been edited by kitaki (edited 05-14-2003).]

 
Old 05-16-2003, 11:39 PM   #4
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HI Tilly,
We just had a follow up visit with the neurologist and he changed the medication Matthew has been taking. He was on Orap and Clonidine and the combination wasn't working. He also did a streptococcal test (the same virus that causes strep throat) to see if Matthew has the virus in his system. He says that can make Tourettes symptoms worse, which I had already read about. Matthew also has ADD and OCD which are part of the SPECTRUM of having tourettes. Every child is different. We have decided to home school Matthew. He just couldn't handle a class room setting. A lot of Tourettes children are labeled with learning disabilities when in reality, they have to focus so much on not twitching or jerking or grunting or whatever, so that they aren't made fun of by their peers, that they don't have anything left to give a teacher. You know, children can be cruel when there is nothing wrong with you, but if there is the least trait different, it can be very demeaning, and totally ruin a childs self-esteem. If I had to make one suggestion or recommendation, it would be to help your child understand that God made them exactly the way they are and he has a special plan and purpose for them. Also, try to educate people that the things he does, he truly can not control. No more than you or I can control blinking our eyes, or breathing. You do it and are not even conscious of it. Children die every day from tourettes, not a physical death, but an emotional death. They look like perfectly healthy kids, and sometimes people don't understand that they are special needs children. If your child is in a school setting, allow him private times to "release" his tics. Most of the time, they can be suppressed for short periods of time but then they have to be released. Talk to his teachers about allowing your child to take small breaks away from the classroom,if needed, to be allowed to release his tic. I hope I have helped. If you have any questions or comments, please let me know.
Michelle manor

 
Old 06-02-2003, 02:35 PM   #5
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ANY NES ON TOURETTES LATELY? I AM GOING TO TAKE MY SON IN T SEE DOCTOR AT CHILDREN'S HOSPITAL...JUST TO BE EVALUATED. H HAS MILD TICS, AND I WAS WONDERING IF THERE WAS SOMETHING THAT COULD HELP HIM. REALLY DON'T WANT MEDS, MAYBE SOMETHING VERY MILD..HE'S 12 AND HAS HAD TICS SINCE HE WAS 4-5

 
Old 06-10-2003, 01:42 AM   #6
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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).]

 
Old 07-21-2003, 10:24 AM   #7
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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).]

 
Old 07-22-2003, 06:51 PM   #8
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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!!

 
Old 07-23-2003, 08:07 AM   #9
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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.

 
Old 07-26-2003, 07:54 AM   #10
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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!

 
Old 08-02-2003, 07:45 PM   #11
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My son is 12 y/o, has ADHD and tics, possibly tourettes. There is a diagnostic triad of ADHD, tics and obsessive compulsive disorder that is diasnosed as Tourettes. My son has some very mild OCD symptoms. His ADHD was diagnosed when in kindergarten. The tics started in the 3rd grade, after being on stimulant meds. for the ADHD. The tics first emerged as squinting, and have changed over the years taking the forms of head shaking, shoulder shrugging, verbal grunting, throat clearing, among others. The tics seem to be exascerbated by the stimulant meds. and stress. Tyler is now on Strattera, a non stimulant medication for ADHD. It has also had the effect of decreasing the tics unless Tyler is under a great deal of stress. The strattera works well for the tics but not so well for the ADHD. By taking the Strattera he is able to take a significantly smaller dose of Concerta for the ADHD and still have good results. He likes it because with the Strattera and Concerta he is able to eat lunch at school, something he was never able to do on the stimulant meds alone. This is a very big social issue, he is now in middle school. One Dr. prescribe resperidol for the tics but I didn't want Tyler to take it because of the range of side effects. At the time, this was 3 yrs. ago, Tyler said the tics did not bother him enough to take a med. for it, so we have never tried the resperidol.
A pediatric neurologist is the type of Dr. you need to see tic's. Hope there is a good one in your area.
There is a tourette's syndrome web site that has lots of useful imformation.
Hope this helps you some.

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Mom of a wonderful "Tigger"
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Mom of a wonderful "Tigger"

 
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