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Diagnosis of TS is scary, but prognosis of a good future should be the focus

A month and a half before my son’s ninth birthday (December 2009), he came home from his friends’ house turning his head consistently and repetitively to his right side.  He had long hair at the time, but he was no Shaggy of Scooby-Doo fame. But it did appear as if he was doing a hair flip.  When I asked him about it he said it was nothing. After a couple more days of this, he told me that it still wasn’t a problem but that he really wasn’t doing his head turn on purpose.

I decided to hop online and dig around a little about “involuntary head turns” or something like that, never even suspecting what I read would eventually lead me to being the one who not only diagnosed my son but also myself (undoubtedly I had a mild case of TS throughout my middle childhood and adolescence).

Hindsight being 20-20, Connor had been symptomatic since he was 5 or 6.  His symptoms manifested like many TS children do — eye blinking (brushed aside a tiredness), poor sleep hygiene (single child of a divorced coupled…adjustments), sniffing and throat clearing (undiagnosed allergies of some type, since he was previously tested and passed with flying colors). All of this, as we now know, were the early signs of TS — not that we could have done anything about it anyway.

Formal diagnosis came 4 months later, even though appointments with neurologists were made very shortly after his head tic surfaced.  Waiting times for appointments: One of several  complaints I have about the medical community, but I’ll blog about that on another day.

So once “C” — as he is known by his family, friends, classmates, teammates and coaches — was diagnosed it hit his mom harder than it did me. I was 95 percent sure by then of his condition. I think his mom was hopeful that it was something else, maybe anything else.

So as we left the Morristown office complex, where the diagnosing neurologist was located, it was with heavy hearts and a great deal of uncertainty. I was personally the same as I had been pre-diagnosis, which was extremely concerned about what the future would hold for him.

One of the most frustrating and confounding aspects of TS, for me, is that no one, and I mean NO ONE,  can give you any idea about the what, when, how long or how mild/severe the symptoms of TS will be.  This uncertainty weighed very heavily on our minds, but especially so on mine.

When you handle it the best you can, anything and everything is possible.

And though it’s been tempered over these past two years (Connor is I guess what would be classified as a high end mild/low-end moderate case at this point. The only medication he has been on worth mentioning is ibuprofen & acetaminophen combo recently as his head tics have taxed his neck muscles), it’s never completely out of my mind.

Where are his symptoms headed? I don’t know. And like I said, no one does. What I do know though is that he will get through this, just like the vast majority of TS kids do and in the grand scheme of things — that’s what’s important. Diagnosis is just that, an identification of a condition. Prognosis however is where hope lives and for my son and for almost all TS kids — their prognosis is good. That has become our focus

Connor is my hero, but he has always has been, even before his diagnosis.  He’s a regular kid.  Yes he has motor and vocal tics. They are part of him but only a small part. They do not define him by any stretch of the imagination. I’ll blog more about who he is in another post and how he and we have handled school, sports, family and friends, and the future.

0 Comments

  1. on being scared to sleep – my son w/TS does not have this issue, but my daughter w/OCD, ADD and anxiety does. She is 18 now, and has had a sleep problem, on and off, since she was 8. It has to do with anxiety – I got her therapy with a cognitive behavioral therapist who has worked through the roots of the anxiety. The proper anti-anxiety medication is also key, but that is not an easy task to find the right medication. Now at 18, she is finally experiencing sleep and is a freshman at college and doing well. Keep at it, find the right health care providers – use your instinct to ferret out the bad ones, and stick with it. It can be addressed successfully. best of luck.

    • Hi,

      No it was Dr.Topper. The best neurologist I’ve found is Arnold P. Gold. He is like a thousand years old but has a tremendous bedside manner and has a very humanistic approach. Most docs today are worth their weight in salt and quite honestly, you know more than most on this topic….I guarantee it. All the best.

      Kevin

  2. I love your statement…When you handle it the best you can, anything and everything is possible.

    Nicely written~ One of my many concerns is “will it get worse, and how much worse”? My almost 10 year old son’s TS is considered mild. Although to me/us it sometimes seems more than that. When my husband and I watch shows on TS with someone with severe tics, we always wonder if he may ever “get that bad”. No one will ever know. But I suppose we’ll get through it.

    Laura D

  3. Hi,
    I wanted to add here that since my son has been on Abilify, he says that the recurrent thoughts that used to play over and over in his head are gone. He is on a VERY low dose (1mg) as he is very sensitive to medications. My son has slept in my bed for a long time, and just this week has decided to go into his own bed. He does have slight facial grimacing in his sleep too. I don’t mind him sleeping with me; in my opinion, whatever it takes for everyone to get a good night’s sleep is worth it!

  4. Hi Cindy,

    From what I’ve researched over the years, being scared of sleep is not a symptom of TS but I’m sure it’s not uncommon. OCD, TS, ADHD are all under the same umbrella…they are all impulse control conditions (or lackthereof) with essentially the same part of the brain being affected, and as a result sleeping can become difficult for likely a variety of reasons…motor and vocal tics often increase at night (due to “flooding-out”), recurrent thoughts (“songs/words/ideas in my head and I can’t shut them off”)…etc. So it’s not a stretch to see how a child can become scared of going to bed. The tough part is that sleep is obviously very beneficial….it gives the body a break from all of its ticcing,and compulsive behaviors and it’s a natural stress alleviator. I wish I had answers as to how to bring a better/ less fearful night sleep to your son. My son sleeps best in my bed. He is with me week-on, week-off. When he is in a high tic period, I let him sleep in my bed with me or I just sleep in his bed. I know this will pass in time so if that little adjustment can help him through the night, then that’s a simple change and an easy one that I made. I don’t know if this helped at all. Stay positive though. Both of your children have the odds very much in their favor to get better over time. – Kevin

  5. Wow. Your story has touched home. I have a 10 year old daughter diagnosed with TS for over 2 years and a younger brother with no diagnosis but I am starting to see things. You mentioned sleep. Besides the eye blinking, ripping off every tag on every piece of clothing, my son is scared to sleep. Is that a common sympton shared and how can I help him. It is almost a year of musical beds at night with tears and real fear. Sometimes I think his fear is that he knows he has it from what we have told him related to his sister. Thanks for sharing.

    • Sleep issues are common with many of these conditions, though sometimes, for different reasons. TS can cause tics at night that bother or hurt, anxiety disorders can include phobias or persistent fears. OCD is anxiety related and can cause a child to have bed thoughts and pecorm rituals in bed. ADHD can cause racing thoughts and hyperactivity. I see most sleep problems related to anxiety disorders and ADHD. I respectfully disagree that impulse controll is the basis of all these disorders, though I’ve heard specialists say this. Studies show that children with TS actually have been found to have more impulse control, as they must practice higher degrees of control as a coping strategy. ADHD, the hyperactive and combined types, are associated with impulse control difficulties, however, as can other behavioral disorders. Social anxiety can often counteract impulsivity, however.

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