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Thursday, March 31, 2011

"Sugar ticks"

Crash about age 5, around the time his first tics appeared.

Everyone knows that too much sugar is never a good thing. All the long-term health effects are well-documented. Parents laughingly blame their kids' hyper-active bursts after holidays and birthday parties on the copious amounts of sugar consumed. I always have! I never thought, though, that it could have such a fast, obvious, visible impact on an already existing condition.
Crash was diagnosed with mild Tourette's syndrome last year after developing some disturbing eye-rolling , grimacing and hard blinking. We thought it was an optical problem as he already had glasses. When his eye doctor referred us to a neurologist, I knew. After the diagnosis, the initial anger, sadness for Crash, crying and many sleepless nights spent reading and researching, I relaxed. Over the next few months, it settled into just the hard blinking. We don't even notice it most of the time anymore. It's so mild that it's technically not even Tourette's. The neurologist told us that if he developed a vocal tic to accompany his facial twitches, then it would officially be Tourette's. Vocal tics generally appear between the ages of seven to nine, although they can manifest at any age. Crash just turned eight last month. They can be any sound made with the voice: grunts, throat-clearing, words, etc. . Vocal tics are very rarely coprolalia, or swearing. Only a very, very small percentage of people with Tourette's swear.
After his sister's birthday party last fall, he did develop a disturbing vocal tic for a couple of days- chronic throat-clearing. He wasn't sick. It was a very regular, rhythmic, "uh-hmm" UH-hmm". Josh and I watched him quietly for a couple of days, but it went away as quickly as it had appeared. Relieved, we went on with our lives. It happened again after his brother's party in October. We were out running errands and I reached for his hand and he panicked and told me he needed his fingers free. With a sinking feeling in my stomach, I asked him "why?". He turned red, paused, and said, "I have to do this, Mommy" and showed me how he was rubbing the thumb and fingers of both hands together. I told him it was okay and held onto his wrist instead while I tried to swallow my worry back down. That one disappeared after a day or two, too. We happily forgot about it and went on with life once again.
I noticed this past Sunday, though, that Crash had started "tic'ing" badly and had even developed a new tic (biting his lower lip until it's raw). I didn't want to make a big deal about it for fear it would make it worse ( we believe the best course of action is to not speak about it unless he brings it up. *I* feel that drawing attention to it and making it a focus and a "problem" would only serve to give it power). It's worked well so far. He's a very sure, out-going, confident little boy full of humor and personality. He hardly notices it and neither do his friends. That is, until he came to me this morning upset and crying. It's driving him nuts. He said, "what is WRONG with me, Mommy?" After my heart finished shattering, I hugged him and explained that his tics had just gotten a little bit worse than usual and that we'd try to figure out how to make it better again. Princess, standing by with a worried look on her face gasped and said, "ticks?! How did Crash get ticks on him?". I can always count on my girl for some comic relief. We explained and I got them back to their schoolwork.
After doing some reading, I finally made the connection: sugar. He has a bag of candy left over from a birthday party pinata and has been having a piece or two once a day for a few days. His blinking has become almost violent and the skin under his lip is rough and raw. I sat down with him during a quiet moment yesterday and asked him if he could please quit biting his lip because he was hurting himself. He whimpered and said he couldn't- he HAD to do it and it felt weird if he didn't. *sigh* Hello, Tourette's. Sorry to see your ugly face.
I have since confiscated the bag of candy (much to his misery) and am going to pick our menus carefully over the next few days, avoiding as much refined sugar as possible to see if there's an improvement. I'm sure ( I pray) there will be. I know there is often a genetic predisposition toward Tourette's ( it has never appeared in either of our families that we know of, though), but I'm almost 100% positive there are also environmental factors, too, such as diet. It'll be interesting to see if my theory is right as there is a chance he could pass it onto his kids and it would be nice to know how to keep it in check. It's not horrible. There are far worse things it could be, but a miserable kid is a miserable kid and that is a VERY big deal to Mommy. I hope to have my happy, confident boy back soon.
UPDATE: A few weeks, out, we're pretty sure it was the sugar and/or possibly artificial coloring. His "new" tic has disappeared and we're back to our baseline normal. We've decided to split the difference trying to find a happy balance. I went ahead and let him have a little candy at Easter but informed him it might have an effect on his Tourette's. We talked about it for a bit and he decided ( of course) to eat his chocolate bunny and accept the consequences. His blinking did increase for a few days, but he didn't develop any extra noticeable tics. Since his older brother has food allergies and there is some science to support that Tourette's is a *form* of food allergy, now that we've got it back to "normal", I'm considering doing an elimination diet to see if there is any further improvement. My main suspect is dairy because Crash's Tourette's symptoms began to show up about the same time Goober out-grew his dairy allergy and we began giving it to them. He has always eaten wheat-based foods, so I'm not as concerned about that one. Food allergies in one form or another just seem to be the hand our boys were dealt. Fortunately, we have plenty of experience in that area and it shouldn't be a big deal ;).

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