6 yr. old diagnosed with tourette syndrome

amother

Thu, Apr 25 2013, 3:24 pm

Hi,
My 6 yr old was just diagnosed by a neurologist with tourette syndrome. He has vocal tics at times, and also blinking, etc. His behavior has taken a turn for the worse, also. I wonder if his turning around in class can be involuntary - I forgot to ask the neurologist.
The dr. said to take him to a therapist, to help minimize stress which makes the tics worse.
I really don't know where to start with any of this.
I think the therapist needs to specialize in anxiety.
The diagnosis really makes me scared.
I live in the brooklyn area.
Can anyone help?

amother

Thu, Apr 25 2013, 4:13 pm

We've been going through this too. I was very panicky at first but I'm beginning to adjust. There are a few psychologists out there who specialize in Tic Disorders. Anxiety very often goes along with Tics, as well as ocd and adhd. My child's tics always get worse when she is anxious. It has been difficult to find a provider that is qualified to see her. However, we are dealing with it and finding it isn't the end of the world.

Our pediatrician mentioned PANDAS when he first diagnosed her, as something to look into. But the neurologist, while he doesn't really believe in PANDAS, said that PANDAS would only be with a dramatically sudden onset of the disease, which we didn't have.
The psychologist felt strongly that there was not enough evidence that PANDAS was a real syndrome.

I suspect that turning around in class certainly COULD be involuntary, as I've been surprised at the things we've discovered my child can't control. Each tic seems to have started from a normalish behavior that she then lost control over. Treating the anxiety will certainly be helpful for your child. To my understanding, you shouldn't try to pressure your child into suppressing the tics, as it is extremely difficult and burdensome for them to do so.
I've also heard that many children outgrow this by their teens.

btw, most therapists will be skilled in dealing with anxiety. Typically I would think you want someone who specialized in cognitive behavioral therapy and hopefully experienced with tics also. Although I don't know if 6 is too young for cbt. I don't know what's available in Brooklyn. Do some googling if the neurologist can't recommend anyone specific.

amother

Thu, Apr 25 2013, 4:33 pm

hugs

my child was around that age when diagnosed...20 years later married with children. The tics never progressed B"H beyond a certain degree, waxed and waned, we never used meds only tried different natural techniques and found biofeedback and the like helped. Age also helped.

hatzlocha

friendsrus

Thu, Apr 25 2013, 5:00 pm

one of the weekly magazines, I'm almost positive it was Mishpacha had a detailed article on this. It might help you to call mishpacha office and ask them for a copy of that issue (I had asked them for a copy of a previous issue for a specific article I was looking for, I paid $5 and a few days later it was at my door). The article might have resources and tips that can help you. Hatzlacha

amother

Thu, Apr 25 2013, 5:05 pm

op here
Thanks so much for the words of chizuk. We've already ruled out Pandas with a blood test. If anyone does have a psychologist that was successful, can you post it? I will call mishpacha magazine, thank you. Also, can the amother who dealt with it with biofeedback and other things post what specifically was most successful, etc.
Thanks,
Anymore guidance would help.

TSmom

Thu, Apr 25 2013, 6:13 pm

I have a 10 year old boy and 7 year old girl with TS. As well a husband with TS. We are out of town so I don't know local docs.

Here is info for the tourette syndrome association. http://www.tsa-usa.org/ They are wonderful and very helpful. The website alone has countless articles that will help make life more understandable. They can give you referrals (especially in NY!!)

If you are willing to watch videos I highly recommend Front of the Class about Brad Cohen. It changed my life. I sobbed through half of it but I came out of it with such chizzuk. Brad is an amazing special person and is an inspiration- an award winning teacher and now school administrator. He has his own foundation as well. We have talked with him a number of times and have met him in person twice. He is my son's hero. Next is Different is the New Normal. Ariel Small as well is inspirational. I got so much from his story and his family is so sweet!!! My son has a lot of the same issues as Ariel.

One thing that has saved us, been a source of inspiration, and life line is Camp Twitch and Shout in the Atlanta area. It is a one week camp (Sunday-Friday midday) for kids with TS from ages 7 and up. They saved my son's life literally. Due to the bullying he wanted to kill himself and they saved him. The support and family I now have has been beyond anything else. They have gone above and beyond for our children's Jewish needs. Above and beyond. My daughter when diagnosed, her first comment was to ask if this means she can go to camp too.

The biggest piece of advice I will give you- don't try to hide it. Educate, educate, educate. Be open. It will make the difference for your child.

amother

Thu, Apr 25 2013, 10:01 pm

Hi Op,
I'm the amother with the grown child...brings back such memories and I feel for you.
Thinking about it I realize we did not do traditional biofeedback. Actually we did neurofeedback which is sometimes referred to as eeg neurofeedback --you can google it. I even tried it myself just to see what it was like. I won't be able after all these years to explain it as well as the googled websites. It doesn't hurt, one doesn't feel anything, and actually it is fun. One's brain impulses control this computer video game but actually it is using a form of biofeedback to in a sense train the brain to relax or not tic or whatever the case may be. We went weekly and looking back I can see how truly helpful it was though initially I was skeptical.
It was not a panacea as the tics did not always stay fully disappeared indefinetly but it sure was the best management technique we found. If anything people thought my child had a mild head tic at times. Often a child is better able to control it in public and "let it out" more at home which was also manageable. From speaking with others in our situation at the time it worked better than meds or anything else anyone else was trying though clearly each case is unto itself. In our situation a therapist did not help unless it was teaching specific relaxation techniques and exercises.
Please feel free to ask any more questions if I can be of help.
The diagnosis can be more frightening than the actual reality as there is a spectrum from mild to stronger of course.
Hopefully your child will if anything at all have mild and manageable symptoms which do not need to interfere in a happy healthy development and life.
hatzlocha

suzyq

Fri, Apr 26 2013, 9:16 am

I don't have a ton of advice, but just a little hope. My DH has TS and had it since he was a child. At one point, he said it was very bad, with him having tics all the time. But today, you wouldn't know he has it. I can see his tics on occasion, usually when he is starting to relax, or when he is not in a comfortable situation, but generally, you would never guess, and when people find out about it, they are very surprised. I really do hope your child finds a way to deal with it - I think they key is making him feel comfortable and ok with himself regardless of the tics - my DH was excellent at sports and that helped him fit in despite his tics and I think if it hadn't been for that, he would have had a much more difficult time. Good luck with your special son!

momyay

Sun, Jul 14 2013, 6:03 pm

My son is 13. Very popular n confident. He's had tics for yrs. He was seen by dr molofsky in ODA Health Center in Brooklyn. Extremely kind, knowledgable and helpful. He advised to just learn to live with it... For the most part we did. We did try a chiropractor for a yr n it didn't change anything. I'm looking into the possibility that accupuncture might be helpful. Any info on that?