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509momof2

Child is ticcing, how do I calm myself down?

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Hi there - 

My 9 yo son has had what our doctor called transient tics on and off for a year.  They started after he had pneumonia last winter, with a throat clearing that was legit at first, then we realized he was just doing it over - and over - and over, well after he was better.  Then last summer, those went away and he had a very mild shoulder thing where he would sort of roll his shoulders back like he was stretching, and he always seemed like he had to stretch.  Then we were so happy when everything went away in the fall, and all continued to be well until this spring, when he got a cold and the throat clearing continued,  Then it stopped, and the stretching motion came on.  

Now he's not stretching, but the throat clearing is back, with a high pitched sigh/squeal (or what sounds ike it), or humming a song. For the squeal, he says he's clearing this throat and he has to do it.  I'm really stressed out and have cried several times tonight, worried that it's getting worse (he's never had two things go on at the same time).  I'm especially worried about him going to school next week and making audible noises in class.  I'm turning to this forum for advice, and really advice for me - how do I not feel so upset?  I know things could be much worse.  Where do I turn?  Do I call the pediatrician?  Does he need a neurologist?

Any advice is appreciated. 

 

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I am not an expert in this by any means, but I also have a 9 year old with tics.  I have been a basket case, but through it all, my boy is fine.  Here's what I do to calm myself.  I ask myself 'is he being affected adversely by the tics? (bullying, self consciousness, distraction) ' So far the answer has been no.  'So what is my role in all this?'  To provide for my kid and be strong if he needs me.  So far he doesn't need me, so the bigger problem is in me and not him (which is good, because we are capable of changing ourselves if not others).  In preparation for school, I wrote his new teacher a note explaining what is happening with the tics.  I am happy to share it with you if you like. For me, I have a therapist that I am working with because rationally, I know the tics are a tiny part of who my son is but emotionally, I get very anxious. Again, that is on me and I have the power to put things in a better perspective.

In terms of treatment for our son, we started with the pediatrician, who referred us to a pediatric neurologist.  We saw two.  One was awful ("well, then it's Tourette's").  The other was so much more reassuring ("Yup, your son has tics.  He is in no danger.  Try to get him involved in things that keep him focused and help him find ways to relax").  Hearing the two very different voices was disturbing, but at least both concurred that there is nothing more serious going on.   Despite the emotional rollercoaster that the first neurologist created, I am grateful to have taken our son to a neurologist because I know that his general health is not in jeopardy. 

I still get very anxious and I still cry, but it helps knowing that I've taken appropriate actions for my son and for myself.  

Yours in empathy,

 

Sarah

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509Momof2

I empathize with you. My DS is 9 as well and has tics that started this year.  We are working on diet to help. I too am worried and sad.  I hope the school year started off well for your son. 

 

Sarah

I really took your response to heart. Thanks for taking the time to write it. So many good points. 

 

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Hi...our son had the exact two tics you described, the constant throat clearing and the shoulder roll.  I just posted my first post here a couple days ago on our experience if you are interested in reading about it.  Long story short, is that we went from pediatric neurologist to psychiatrist to a PANDAs doctor...and nothing worked/sat well until someone recommended a functional neurologist.  We are in Illinois, and were recommended Dr. Matthew Imber out of Lemont.  Of all the online searches for help with tics we never stumbled across such a doctor or recommendation, and by working with him for a couple of months our son's tics simply disappeared.  I can't recommend this field, or him, enough, as this was incredibly stressful for both myself and especially my wife.  

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@edsonr

Hi, yes, definitely.  The first thing the doctor keyed in on was whether the tics were happening on one side.  I.e., was the chin stretch, shoulder roll, etc. predominately occurring on one side.  He said that if that was the case, which it was, the chances of success in the reduction of symptoms was much greater than if they were happening on both sides.  

A couple examples of treatment:  He placed a little "hat" on our son that had a light attached to the center, that was basically in the middle of his forehead.  He then sat our son in front of a large picture with dots placed throughout.  He gave instructions to follow the dots slowly up the center with the light, and then to one side.  When my wife first saw this she really didn't know what to make of it, but she went with it as he gave hope that we didn't need meds to see improvement.  

Another exercise that we did for a long period of time, which we only do once a week now, is something called Brain Beat. He suggested we buy this online after we had already seen considerable improvement. Apparently the exercise itself has been used for a fairly long time, but now in a fun, video game-like way.  You put on a set of headphones and a glove of sorts with a clicker button on it and basically try to clap to a continuous sound.  You can beat levels, etc, and each session was no more than five minutes.

There were others too, but my wife was there each time and has a better memory of each exercise.  But bottom line was they were very low impact, but helped immensely.  

Edited by cova

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Thank you all for your responses!  @cova I am so interested in the treatment you mentioned.  We're in Bolingbrook so Lemont isn't too far.  

So just today, DS has come down with what we think is a cold, but I'm wondering  if it could be an undiagnosed allergic reaction to food (sniffles, lots of gunk in his throat).  He's now legitimately coughing (vs. what we have thought was a throat clearing tic),  and oddly, his tics have completely disappeared.  His neck movements and stretching movements that were very obvious yesterday are gone.  It's very strange (in a good way, I guess?). Most of what he has is in his neck or head area so now I'm wondering if it's all related to undiagnosed allergies.  Any insight on that?

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After being a year into the tics, neurologists, evaluations, etc I can tell you this.  I too was WAY more worked up about the tics than my son.  It took him telling me to chill out and that he's fine.  Don't go off the deep end changing everything in his life (food, gluten, etc...) unless there is credible evidence it will absolutely help him AND he agrees with it.  My son HATED all of the gluten free crap and told me he'd rather tic than live like that.  

On guanfacine now, very active in high level sports, very social, and his buddies are great with any tics that are noticeable.  

Edited by jason_dfw

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