A month and a half before my son\u2019s\u00a0ninth birthday (December 2009), he came home from his friends\u2019 house turning his head consistently and repetitively to his right side.\u00a0\u00a0He had long hair at the time, but he was no Shaggy of Scooby-Doo fame.\u00a0But it did appear as if he was doing a hair flip.\u00a0 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\u2019t a problem but that he really wasn\u2019t doing his head turn on purpose.<\/p>\n
I decided to hop online and dig around a little about \u201cinvoluntary head turns\u201d 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).<\/p>\n
Hindsight being 20-20, Connor had been symptomatic since he was 5 or 6.\u00a0 His symptoms manifested like many TS children do — eye blinking (brushed aside a tiredness), poor sleep hygiene (single child of a divorced coupled\u2026adjustments), 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.<\/p>\n
Formal diagnosis came 4 months later, even though appointments with neurologists were made very shortly after his head tic surfaced. \u00a0Waiting times for appointments: One of several\u00a0 complaints I have about the medical community, but I\u2019ll blog about that on another day.<\/p>\n
So once \u201cC\u201d —\u00a0as 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\u00a0sure by then of his condition. I think his mom was hopeful that it was something else, maybe anything else.<\/p>\n
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.<\/p>\n
One of the most frustrating and confounding aspects of TS, for me, is that no one, and I mean NO ONE, \u00a0can give you any idea about the what, when, how long or how mild\/severe the symptoms of TS will be.\u00a0 This uncertainty weighed very heavily on our minds, but especially so on mine.<\/p>\n
When you handle it the best you can, anything and everything is possible.<\/p><\/blockquote>\n
And though it\u2019s 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\u2019s never completely out of my mind.<\/p>\n
Where are his symptoms headed? I don\u2019t 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\u2019s what\u2019s 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<\/p>\n
Connor is my hero, but he has always has been, even before his diagnosis. \u00a0He\u2019s a regular kid. \u00a0Yes 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\u2019ll blog more about who he is in another post and how he and we have handled school, sports, family and friends, and the future.<\/p>\n
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