Question for Moms of Children with Tourettes Syndrome

Updated on January 19, 2017
A.N. asks from Winter Park, FL
5 answers

My 10 y/o son has Tourettes Syndrome. His tics are out of control! I tried medication in the past but it knocked him out. I read that there is no "miracle drug" to reduce tics, and with all the side effects, I'd rather not try more drugs. I am going to try neuro feedback and see how that goes. I read that botox can help reduce tics. Anyone try that? If there are any prescription drugs (I'm still interested to know), or anything else that has helped your child, can you please let me know? Thank you!

What can I do next?

  • Add yourAnswer own comment
  • Ask your own question Add Question
  • Join the Mamapedia community Mamapedia
  • as inappropriate
  • this with your friends

More Answers

D.B.

answers from Boston on

My good friend's son was diagnosed at age 13. It started with throat clearing, which was easily misdiagnosed. When the barking started, it was more obvious.

They did a lot of things, from behavioral therapy to a variety of medications. They saw a pediatric neuropharmacologist to cover all their bases. They did find that things went a bit haywire when he went through puberty, so I think it's advisable for you to find a good team - yes, TEAM - of professionals now while he is young and (presumably) pre-pubescent. You have to expect major changes in the next 4 years that will require adjustments.

A lot of the drug choices are dependent on what else he is displaying - appetite changes, depression, lethargy, obsessive-compulsive behaviors and more. Please get a good team at a children's hospital or top-tier mental health facility so that everyone's talking to everyone else.

I work extensively in food science and I am a big believer in patented supplements for a variety of issues and general health. I follow epigenetic research too, because there are food-base (plant-based) peptides that help a variety of epigenetic abnormalities. I would still contact a good pediatric neuropharmacologist in a case when someone's tics are really out of control.

There's no miracle drug, that's true - but what's your option? To leave him out of control because otherwise he'll be lethargic? He needs a life, and he needs to learn to cope. Get a good behavioral therapist who will work with the pharma side.

2 moms found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

M.6.

answers from New York on

Our 2 special needs kids do not have Tourettes, but have other issues for which they are medicated. I think the best piece of advice I got when my kids started on medications to manage their symptoms (and the best piece of advice I can give) is WAIT! So many parents don't like the instant side effects of drugs and they don't wait until their child's system is used to it - never seeing the true benefit of the drug. Our kids have been on so many drugs that the initial reaction is lethargy (or other manageable side effect) - I can't imagine if I would have said "whoops, stop, it is making him tired, try again." We have had great success with these medications by simply waiting for 30 days to see how long term tolerating goes.

Not to say that if my child was having a life threatening or even truly uncomfortable reaction that we wouldn't stop. However, many drugs folks take have side effects. It is just the price a person has to pay for taking medication. However, discarding medications after short periods of time simply because you don't like one of the side effects isn't really giving it a fair shot.

Good luck.

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

E.J.

answers from Los Angeles on

Google "Magnesium for tics"- both of my sons around the age of 5 or 6 developed a series of various tics that would come and go. My oldest who is now 12 grew out of it pretty quickly but my younger one still has them. I researched and found that by giving them magnesium supplements and foods with lots of it, it dramatically reduced the ticks. It is definitely worth researching. And i agree with the below poster that diet can be a huge help. I went to a homeopathic doctor and she ordered blood work that identified some interesting vitamin deficiencies that i was really suprised about as i try to feed my kids as healthy as possible within reason. Good luck!

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

S.W.

answers from Detroit on

Hi A.,

I have a girlfriend and her son has Tourettes. She utilized the neuro/bio feedback. She also said that changing his diet (they do a version of the paleo diet) made a huge difference. She also limits his screen time to one hour a day, as the electronics are intensely stimulating for him at a neurological level. I believe she worked with a pediatric neurologist at Childrens' Hospital in Detroit.

thoughts to you and him. :-) S.

R.A.

answers from Boston on

My brother has some degree of relief from the neuro/bio feedback, however in his case it was temporary. He suffers from schizophrenia and has involuntary muscle reactions, and tics.

I've been researching essential oils for him as nothing else seems to be helping.

For Updates and Special Promotions
Follow Us

Related Questions