Tic disorder?

[Bluebird]

DS (6) has a tic disorder and has intermittently cycled through several different tics over the last couple of years. We’re 6+ months into a throat sound one that I’m somewhat ashamed to admit is becoming a huge problem for me. (I have misophonic tendencies and am doing the best I can.)

It’s also affecting DS socially now, but my pediatrician has not been a lot of help. His guidance in our last few appointments is that we should treat with meds when it becomes problematic for DS, and our only other option is therapy that will be difficult to get these days because of COVID and extensive wait lists.

Does anyone else here have a kid with a tic disorder? I want to help my kid and I feel like I’m totally failing him on this right now. What other options do I have before meds?

[amandine]

I have a child with Tourette's syndrome. If tics have lasted at least one year and there has been at least one motor tic and one vocal tic, then he qualifies for a TS diagnosis. You should make an appointment with a pediatric neurologist. Regular pediatricians don't tend to know a lot. He is very likely too young to benefit from CBIT, which is the targeted therapy to redirect tics. However, kids with Tourette's often benefit from CBT/regular therapy. It's also important to know that tic disorders/TS usually come with ADHD, OCD, anxiety, etc.

[amandine]

The Tourette's Association of America has been a huge help to us, and you should look at their website for lots of resources. They also have local chapters that can help directly with the social issues at school, etc.

[Bluebird]

Thank you amandine. He had a motor tic for a while also in early 2020, but it hasn’t come back since then. Not sure if he would still qualify as TS in that case. There are some anxious and OCD tendencies as well, so I’ve wondered.

I will look for a pediatric neurologist and am glad to have something to do next.

[upstate]

My son who also happens to be 6 does. Have you seen a pediatric neurologist? We started with the pediatrician but she referred us to a neurologist for the actual diagnosis/treatment. I found the appointment with the neurologist to be really helpful in handling what was going on with a more informed perspective. For instance 20% of the population has some type of tic so it’s much more common than I realized. You and your son are not alone. Also I learned about different triggers (in our case excitement & growth spurts) which helped me to be more prepared when my son’s tic ramped up. The neurologist recommended against medication in my son’s case, but was clear if we felt it was causing quality of life issues we could reevaluate. I don’t know if it would be helpful in your case, but taking the time to explain in simple, general terms to my son’s bestie what was happening and that it wasn’t hurting him made the tic a non issue for my son while playing with this friend. My sympathies on the throat noises. That was my least favorite of the various tics my son has cycled through. Hopefully, it’s almost time to move on to something less grating.

[unicornofthesea]

My son has actually gone through this over the past few years. He's almost 8 now.
It started with squinting when he was 4/5ish...I had his eyes checked thinking that was the issue but his sight was fine. It lasted a few months then went away. It reappeared throughout the years and I assumed it was stress/screen time.

The squinting eventually became full facial tics and at some point a throat clearing noise.

I had him seen by a pediatrician that said she didn't think it was neurological and recommended a medication that typically treats Adhd. There were major side effects for this and one was having to take his blood pressure.
That was a huge no for me since it wasn't seemingly affecting his life to have these tics (I asked people closest to us to not mention it to him because it would make them worse anytime I asked him about the tics)

Long story short I looked into other ways of treating them and ended up doing Magnesium gummies and CBD gummies.
He didn't even finish a bottle of each and his tics slowly went away!

Ever since then they actually haven't come back. I haven't seen him have a tic in probably a good 6 months.
His pediatrician did say he could grow out of it so maybe that's happening as well. But I feel like they really helped him.

[aydee]

My soon to be 9-year-old has cycled through a number of different simple and complex motor tics over the past few years. Stress often triggers new ones, and early in the pandemic when school went virtual is probably the worst I've ever seen from her. They're nearly gone now and I haven't really noticed any since last spring. For many elementary aged kids the tics eventually go away on their own, though others will end up with a Tourette's diagnosis. In my experience, pediatricians aren't especially familiar with tics. Given that the tics may resolve on their own, it may not be necessary to actively treat tics unless they're causing a problem for the child, family, school, etc. In terms of treatment, habit reversal and CBIT can be very effective. This link explains more about it: health.usf.edu/medicine/pediatrics/rothman/patient-care/habit_reversal

In our case, we did use habit reversal on a few tics that were becoming problematic (ie., resulted in her leaving lasting marks on her skin, large motor movements that were distracting). Others we talked with her teachers about, as they were slowing her down during timed tests. Most of them we ignored and they eventually went away.

I'm sorry the vocal tic has been so hard to tolerate and that this particular one has stuck around so long. It may be helpful to find a therapist who can work with him (and you) on this. The Tourette's Association of America has a directory I believe. Given how many therapists are currently doing telehealth, I wouldn't hesitate to reach out to a therapist who isn't geographically as close as you might normally choose. Finding someone with experience is important here.

[newspapers]

I have multiple tics myself from childhood myself, including a vocal one that came about in early adolescence that sounds like it might be similar to your son's. I know mine is most insistent when I am stressed. I was never dx'd because it was the 80s when I first started ("clicking" my arm and widening my eyes) and my mom just told me to stop, lol (she had no idea). Anyway, all this to say, good for you for finding a neurologist. I had to learn how to stop ticcing during meetings in my early career before I realized that they were, in fact, tics. It was hard!

[rachacha]

My son is 8 and has also had various tics since he was about 5. Like you, the vocal tics bother me the most due to my own sensory issues. For about a year now, his most prominent tic sounds like a fake hiccup. It is definitely worse when he is feeling anxious. He started anxiety meds last year to help with his sleep and the tics are far less frequent now.

[betts]

17yo DS has had them since about age 8. Started with some nose flares. Then some chin movements. He changes them all the time. Our pediatrician mostly blew it off for years and said that as long as it wasn't affecting him (making him feel selfish conscious, bullied, etc.), to just ignore it because she said that medication is typically the answer and side effects of the meds can be a wash for the original tics. My DS was adamant about not treating it either even when I assured him to not be embarrassed. He was then and still is Mr. Popular, a stellar athlete, and a good student so we did just ignore it. At 16, they increased in intensity and almost became ritualistic and my H really wants to address it. We have our 1st appt. With a pediatric neurologist next week (we had to wait 9 months for an appt!). I would suggest addressing it now because I feel really badly that we didn't do it sooner.

[peachtree]

My DS1 (age8) has cycled through several tics and the throat clearing one also puts me on edge too so I totally get that part! If he started near me I would gently say "uh-uh" or no thank you and he would stop. I agree pointing them out can make them worse especially if it's done harshly but for us that very gentle reminder seemed to help. He was tapping his fingers so bad for a while he rubbed them raw.

The family doc told me that as long as none of them lasted more then 6 months it was probably Transient Tic Disorder. A social worker agreed with that as well and says she sees it in lots of 8-11 year old boys.

That being said we are going to start the process of evaluating him for ADHD or maybe an executive function disorder. And to me the tics are becoming a piece of that puzzle rather then an isolated issue.

[Bluebird]

Thanks all, we now have an appointment with a pediatric neurologist in April.