Tics and Tourettes

[Anonymous]

I have one kid diagnosed with Tourettes and another one that sadly will be diagnosed soon as well since he has started to tic as well. We have tried a number of things over the few years that my first child was diagnosed. I would just like to hear from anyone that has had success/improvement with their child's tics that you could share, whether its medication, diet, supplements, therapy, a specific doctor, etc. Thanks in advance!

[Anonymous]

I have 2 with TS and a 3rd that likely will eventually be diagnosed. TS is such a varied syndrome in terms of symptoms and severity so our experience may or may not help. We saw Marc DiFazio at CNMC and loved him. My oldest had a flare of upsetting tics (spitting) in 3rd grade and started on clonidine. Before that her tics were more subtle. We found it worked quickly to control her tics and she has remained on it for years. She’s had no side effects and is now essentially tic free as a 16 year old. Unfortunately my younger child had a rougher road. His tics became very severe after a trial of Concerta. He was making noises constantly. We were encouraged to stick with the Concerta and add clonidine. It helped a little but it was still miserable and the clonidine made him sleepy in school when the dose was raised. We saw Dr Mansueto and he was great. He encouraged us to wait on behavioral therapy until he was a little older. We then had a neuropsych. The neuropsych suggested stopping the Concerta (she found no evidence of ADHD) and changing schools to a less stressful environment. We saw a huge reduction in tics and felt like our son was finally able to function again. Stress and stimulants were clearly triggers for him. We also decided to switch to Kapvay which is an extended release form of clonidine and that eliminated the sleepiness. He definitely still has tics but they are very mild and not obvious to most people. If we ever have another bad flare we will go to see Dr Mansueto.

[Anonymous]

My kid had facial and vocal tics beginning in first or second grade. We saw an allergist, a neurologist and Dr. Mansueto...and then a naturopath who did a different kind of allergy testing and put him on an elimination diet. Long story short, a gluten-free diet made a world of difference. He's in HS now and is mostly tic free (except when he cheats and eats what he shouldn't--and his blinking/winking gives him away).

[Anonymous]

OP here- thanks so much for some already very useful advice. I have been so against medication but I think its time to give it a try as my older child's tics have gotten worse, he has some motor tics but his near constant loud vocal tics are really the problem. I heard about Dr. Mansueto just yesterday so its interesting for him to be mentioned, will definitely give him a try as well.

[Anonymous]

My DS with adhd and Tourette’s had to stop all stimulants as they all made the tics significantly worse. He now only takes in Intuniv mostly for the ticing, but it does have the added side effect of helping mildly with ADHD. FWIW he had verbal and multiple motor tics.

[Anonymous]

My kid with tics Tourette’s also has OCD. Anyone in this same boat?

[Anonymous]

Anonymous wrote:My kid with tics Tourette’s also has OCD. Anyone in this same boat?

My son with TS has some tics that are OCD-like. I can’t remember the term. He has to do things a certain number of times or even things out (touch his left hand to something his right has touched).

[Anonymous]

Anonymous wrote:My kid with tics Tourette’s also has OCD. Anyone in this same boat?

My kid does not but OCD is a comorbid disorder with Tourettes, so very common to have both.

[Anonymous]

Would dr. Man sue to be able to deal with a child who has intellectual disabilities?

[Anonymous]

Anonymous wrote:Would dr. Man sue to be able to deal with a child who has intellectual disabilities?

Possibly. Worth a consult. Exposure and response therapy does not require insight.

[Anonymous]

Off topic, but we just read Tim Howard's autobiography "The Keeper" and he has TS. It's written for kids.

[Anonymous]

Thanks for starting this post and all he info. DS has transient tics and they are so hard to figure out/treat.

[Anonymous]

My 6 year old has TS. We too would love to learn what had worked for others. Havent tried the medication path yet but are tempted too as his tics become more serious. How do you know when to pursue medication? It feels like the tics are nonstop— new ones starting as old ones go or remain. Sometimes they are becoming complex even. It is so troubling to watch as a parent.

[Anonymous]

Anonymous wrote:My kid with tics Tourette’s also has OCD. Anyone in this same boat?

Make sure you check that your child does not have an underlying autoimmune condition similar to PANS. PANS and cooccuring infections can cause OCD type symptoms as well as, tics. If it is autoimmune/ infection related the good news is that it can be treated quickly and effectively.

[Anonymous]

Anonymous wrote:My 6 year old has TS. We too would love to learn what had worked for others. Havent tried the medication path yet but are tempted too as his tics become more serious. How do you know when to pursue medication? It feels like the tics are nonstop— new ones starting as old ones go or remain. Sometimes they are becoming complex even. It is so troubling to watch as a parent.

We tried to just ignore noises and twitches but reached a point where the tics were literally causing physical discomfort and causing issues at school.