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Living with Tourettes: My Son’s Surprising Diagnosis

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Six months back, a friend asked my husband and me if we thought our son “Dude” might have Tourettes Syndrome.  I reacted like someone had just stabbed me in the gut.  What an extreme evaluation of my kid.  He didn’t have THAT.  Only people who scream and swear have Tourettes.  He just had minor ticks.  I changed the subject and tried not to act offended.  We were offended.  And incredibly defensive internally.

Today, I’m sitting here Googling videos on kids with Tourettes because our little man has Tourettes. There, I said it.  

After an evolution of research and therapy and appointments with the best of the best, it’s clear.  Not a day goes by without a tick surfacing and many have become complex ticks, meaning more than one in sequence.  We consulted with a neurological doc at Children’s Hospital of Colorado and she confirmed that while his case is minor, it is Tourettes.  It didn’t phase her and she explained that if he can live a happy existence and have ticks, who cares?  She didn’t say those exact words, but that was the basic concept.  Of course it bothers us as his parents.  It’s often painful and frustrating and exhausting, for US.  But what about for him?  He doesn’t really care.  He doesn’t know any different. Ticks to him are like sneezing or coughing to us.  He has to do it.  His brain insists on it.  It makes him feel good or maybe better. That’s what he would tell you.

Tourettes isn’t always the extreme cases of people walking around dropping the “F bomb” like it’s their job. There are cases like that, but those are extreme.  I can’t imagine being held captive to that kind of internal struggle.  Cases like Dude’s happen to 1 in 1,000 kids, mostly boys.  You might notice, you might not. Depends on the day in our case.  A lot of people think Dude has itchy eyes. Nope, just blinks a lot.  Others think he’s trying to act like a mouse.  Nope, he squeaks.  Some comment on how uncomfortable his shirt must be on him.  Nope, that’s just his shoulders shrugging. And then there’s the times people think he’s looking up toward heaven.  Nope, that’s the seizure ticks, or so we think.  He snaps out of it after a few seconds, but he’ll have no memory of what just happened.

We’ve reached the point in time that it’s important to be honest with our Dude.  He’s old enough that he should understand why we drag him from doctor to doctor.  He should feel proud of his gifts and the way God created him.  He should feel encouraged and motivated to strengthen the parts that need strengthening.  He knows that he’s going to Brain Balance Centers three days per week so that the right side of his brain can get the superpowers his left side was born with.  He knows that the 1.5 hours of home therapy, four days per week, is for that purpose.  He also knows it’s up to him to work hard to get the very best powers.  

He’s very clear that he has Tourettes and that it’s OK.  It’s not a big deal.  But he’s also becoming keenly aware that kids around him and adults alike think it’s weird and annoying and disruptive.  And he knows there’s no one else “like him” at school.  I hate that.  I won’t allow him to feel alienated for something he has no control over.  And I won’t allow him to believe that he’s annoying or “less” because of his struggles.

Brain Balance has been a blessing in our first three weeks.  Challenging, all consuming, overwhelming, expensive and enough to put the rest of life on hold?  Yes.  Have we seen the digression they told us to expect?  You bet we have.  But when I sit in that waiting room and talk to other parents about what they’re walking through, it eliminates the feeling of isolation that’s so easy to get drawn into.  Their eyes say the same thing my eyes do.  Their deep breaths understand my deep breaths.  Their frustrations and exasperation over school-related struggles are in line with mine.  It’s refreshing to say the least.  You know who else relates to each other there?  The kids.  My kid.

Last week we started a new time slot and Dude was given a new “buddy.”  Upon seeing who his new bud was, I smiled internally because I knew this 10-year-old boy has Tourettes.  I saw his mom clinging to the words of the director that the increase in ticks means the process is working.  I saw the hope and the resignation in her eyes.  I saw her son, Ian, exhibiting similar ticks to my sons.  I spent the hour talking to Ian’s mom while our boys were in therapy together.  I told her that Dude has Tourettes too.  You would have thought I told her she had just won unlimited wine for life.  The news was that good.  I understood.  We related to so much of what each other has walked through and I know it felt just as terrific to her as it did to me.

When Dude came running, full force, down the hall toward me at the end of his session, he whispered (loudly), “My new buddy makes noises too, Mom!”

Both moms smiled, genuine smiles.  Ian whispered something to his mom and she said, “Didn’t you notice he had ticks, too?”  He replied, “Oh.  I thought he was just copying me.”  

That broke my mama heart on so many levels.  For Ian and for the 10-year-old version of my son.  Rather than grab Ian’s cheeks and tell him how awesome he is I chose to tell him how cool it is to meet other kids with Tourettes.  He told me there’s only one other kid at his school with ticks and Dude announced he’s the only one at our school.  The only one. That’s just not a place anyone wishes to be in.

Now we have to navigate a way for our little man to turn this into a teaching tool for other kids.  This video spoke to me quite loudly.  If nothing else, it’s evidence to our little man that he’s not alone in the world.  The more we can prove that to him, the less alienated he’ll feel as he matures.  At least that’s the hope.

Gwen is a Denver mom of two kids. Photo: Doctor Tipster

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Comments
  • comment avatar Amber Johnson January 22, 2015

    Gwen,thank you for sharing you story. I think many parents can relate to this on some level. My kids have had nervous tickets over the years but none more prevalent than my daughter when she did a strange head-trusting movement for months. I, too did a lot of research (including Tourettes Syndrome) and she eventually grew out of it. But I can understand on some levels the challenges parents are facing with treatment.

  • comment avatar Ruthie January 22, 2015

    If the tics last less than a year, the child may have a transient tic disorder, meaning that the tics will go away. In fact, it’s pretty common for children to have tics in childhood that appear for a short period of time and then disappear.

    That’s what happened to us. I’m glad you found a diagnosis early…there are so many resources now to help.

  • comment avatar Christie January 22, 2015

    My son started having head tics at the end of September, he is 8 years old. His Dr. said that a lot of kids develope tics between 8-10. He also told me that their is no “test” that can diagnose Tourette’s. He reccommended to watch him for a year and go from there. He told me not to worry, that tics did not affect his intelligence or physical ablility. Frustrating. I feel like I am constantly staring at his head to see if he is tic’ing and trying to find a pattern or reason.I noticed that the tics get worse when he is excited or stressed. His teacher said she notices him doing it when he is in a hurry to finish his work or during tests. So far it has not affected his grades or classroom participation. I just don’t know what to do, his doctor gave me the feeling that this wasn’t a “big deal,” but it is all I think about. I have read hundreds of web-sites and they have conflicting info.

  • comment avatar Theresa January 22, 2015

    My son developed motor tics a few months ago. Starting with eye blinking then shoulder shrugs. t moved to feet tapping followed by a hop. I toke him to the neurologist that took 7 vials of blood and did an MRI. All came back clear. I bought a book on amazon called Natural Treatments for Tics & Tourette’s A patient and family guide. I put my son on Calcium/Magnesium liquid form and within 2 days his motor tics decreased by 85%. After a couple weeks we stopped giving him it to see what would happen thinking it really couldn’t work like that. Within two days his tics were back full force. Watched him for two days bouncing all over the place. he couldn’t even snuggle to watch tv because his movements were too bad. Back on Magnesium and I have a happy calm child again! If you google magnesium deficiency you will think like I do that most kids are deficient. My son also has a constipation issue and was on Miralax for a year. We took him off that and the magnesium seems to work. Make sure it’s 2 parts calcium to one part magnesium for absorption reasons. I also notice when he eats a lot of dairy like ice cream or yogurt smoothie he seems to tic worse. he has been test and he is not allergic but I believe he has a dairy sensitivity. the book helped me so much!!! I hope this information can help someone out there. it is devastating to watch your child be someone else and Doctors say oh well!!!!

  • comment avatar Claire January 22, 2015

    My son is 10, and had the coughing. Clearing for a long time now. I have moved house and he now rocks his head back and foward. His shoulders rock too. The cough has gone to a sniff now. Im going to get him checked too. He does his when excited, or very ingrosed in television,eg power ranges. Look at you tube, all the different tics and listen to the children with them. Im hoping my sons calm down, but the more i learn about it, the better i feel. He is a great footballer and very happy boy. I know how you feel. My son rolled his hand 50 times a day aged1 till 3, i thought. Oh what life will he have, age 3 he was very vocal and atheletic, the hands stopped. Then i was so stressed. Then age 9 began the clearing throat. I am going try and take each day, as it comes. His little quirks make him ross.

  • comment avatar Gwen January 27, 2015

    It’s great to see so much dialogue on this. Thanks ladies. Tics are incredibly common in kids and they don’t typically end with a tourettes diagnosis. Luckily they bother us adults far more than the kids themselves. They’re definitely more prevalent with stress and being tired. We’re not treating our son unless it starts inhibiting his daily life. Most kids grow out of tourettes by 17 which is encouraging.

  • comment avatar George Mouyios June 24, 2015

    Well, I myself have those TICs and am doing all right. I am currently 29 and still have them but managed to cope. It normally would surface when you feel uncomfortable or nervous but when I think about it and try a TIC I’d have to do it multiple times. Your kid will learn to do TICs that nobody will really pay much attention to.

    But yeah, it is an incredibly annoying thing to live with at times. When I concentrate on tasks such as driving it will not bother me. Your kids will all be fine don’t worry too much about it. Other kids/folks will look at you strange but you know what screw them.

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