Tonight there was a TV special about Tourette's Syndrome on ABC. I always take advantage of the opportunity to learn more about TS; but they interviewed girls (who are only about 30% of the TS population) who had more severe cases. It's always comforting (initially) when you see the same behaviors or tics in other children that your child has. Then you realize that the child also has a variety of other more severe tics you hope your child never gets.
Tourette's is like a kaleidoscope with all of these interesting little things in the chamber that you might see depending on how it is turned (motor tics, vocal tics, OCD, ADHD, outbursts and meltdowns, dyslexia, insomnia, sensory disorder). We've seen all of this in the past four years. Sometimes everything appears to be almost normal, as if the little objects have settled out of veiw. Then somehow the chamber gets turned and a flurry of new symptoms appear before our eyes. It makes medicating very difficult. There are some symptoms that are just exhausting or that make getting through schoolwork virtually impossible-complex tics that resemble seizures. There's the OCD that leads to cracked and bleeding hands. Vocal tics that affect breathing and swallowing are scary to watch and make taking meds even harder. The insomnia is terrible for both of us because I'm woken up several times a night in hopes that I'll have a solution for helping him get back to sleep.
So far the summer has been pretty mild with regard to tics, and mostly meds free due to Max's hatred of taking pills. I think the extra time he has to sleep and get rested has made a huge difference. But the impulsivity and hyperactivity is off the charts! We started a new medication this week to help. Of course it's helping the ADHD symptoms; but the tics are back center stage and OCD is the supporting actor. Max was so helpful at the grocery yesterday; but every new item added to the basket had to be placed in its correct spot. Sometimes this meant entire sections of the basket being reordered. I would literally have to say, "Ok, I'm pushing the basket now. You need to back up."
It's scary to think that TS usually gets worse before it gets better- we did notice that this year. You wonder how a child can function socially or if he will become totally isolated from his peers. For now Max is nowhere close to shy and such a charmer! He will strike up a conversation with anyone, anywhere, anytime. Usually it's older women. He hit it off great with some "cougar" in the produce section yesterday. They were talking about the preparation of Lychee fruit, gooseberries, all sorts of things. The woman never once spoke to me and I had to call to Max, "I'm moving on to the veggies!"
It's ironic that some of these kids are in GT classes, as well as, special ed. He's smart and creative and can light up a room. God has equipped him with an extra helping of confidence, too. I love him bunches and I know we've still got a long road ahead of us. When you take your baby home for the first time, you don't think about Tourette's. The doctors tell you he's healthy- he looks and acts healthy. You enjoy those first few years, although as a 2 and 3 year old he seems a little more "active" than his preschool classmates. The school tells you he passes all of their tests and seems not to have any delay. So you trek on until the behaviors become potentially dangerous. I'm not crazy. I've seen something for years. You make an appointment with a neurologist and (by the grace of God) the tics present themselves as the appointment nears. Classic onset on symptoms make for a quick and confident diagnosis.
On a recent visit this spring, the doctor asked, "Three boys, but Max is the only one? Well perhaps the baby will be. It is 100% genetic you know." There are times I look at Ian and see those same toddler/preschool behaviors I saw in Max, sometimes worse. They are two peas in a pod really. I hold his little face and look into his beautiful eyes and wonder if we'll find ourselves holding the Tourette's kaleidoscope one day. I cherish the time I have with him now- Tourette's free. I hope we never have to begin that journey with Ian; but I am so grateful that I can be home to enjoy him now.
Tourette's is like a kaleidoscope with all of these interesting little things in the chamber that you might see depending on how it is turned (motor tics, vocal tics, OCD, ADHD, outbursts and meltdowns, dyslexia, insomnia, sensory disorder). We've seen all of this in the past four years. Sometimes everything appears to be almost normal, as if the little objects have settled out of veiw. Then somehow the chamber gets turned and a flurry of new symptoms appear before our eyes. It makes medicating very difficult. There are some symptoms that are just exhausting or that make getting through schoolwork virtually impossible-complex tics that resemble seizures. There's the OCD that leads to cracked and bleeding hands. Vocal tics that affect breathing and swallowing are scary to watch and make taking meds even harder. The insomnia is terrible for both of us because I'm woken up several times a night in hopes that I'll have a solution for helping him get back to sleep.
So far the summer has been pretty mild with regard to tics, and mostly meds free due to Max's hatred of taking pills. I think the extra time he has to sleep and get rested has made a huge difference. But the impulsivity and hyperactivity is off the charts! We started a new medication this week to help. Of course it's helping the ADHD symptoms; but the tics are back center stage and OCD is the supporting actor. Max was so helpful at the grocery yesterday; but every new item added to the basket had to be placed in its correct spot. Sometimes this meant entire sections of the basket being reordered. I would literally have to say, "Ok, I'm pushing the basket now. You need to back up."
It's scary to think that TS usually gets worse before it gets better- we did notice that this year. You wonder how a child can function socially or if he will become totally isolated from his peers. For now Max is nowhere close to shy and such a charmer! He will strike up a conversation with anyone, anywhere, anytime. Usually it's older women. He hit it off great with some "cougar" in the produce section yesterday. They were talking about the preparation of Lychee fruit, gooseberries, all sorts of things. The woman never once spoke to me and I had to call to Max, "I'm moving on to the veggies!"
It's ironic that some of these kids are in GT classes, as well as, special ed. He's smart and creative and can light up a room. God has equipped him with an extra helping of confidence, too. I love him bunches and I know we've still got a long road ahead of us. When you take your baby home for the first time, you don't think about Tourette's. The doctors tell you he's healthy- he looks and acts healthy. You enjoy those first few years, although as a 2 and 3 year old he seems a little more "active" than his preschool classmates. The school tells you he passes all of their tests and seems not to have any delay. So you trek on until the behaviors become potentially dangerous. I'm not crazy. I've seen something for years. You make an appointment with a neurologist and (by the grace of God) the tics present themselves as the appointment nears. Classic onset on symptoms make for a quick and confident diagnosis.
On a recent visit this spring, the doctor asked, "Three boys, but Max is the only one? Well perhaps the baby will be. It is 100% genetic you know." There are times I look at Ian and see those same toddler/preschool behaviors I saw in Max, sometimes worse. They are two peas in a pod really. I hold his little face and look into his beautiful eyes and wonder if we'll find ourselves holding the Tourette's kaleidoscope one day. I cherish the time I have with him now- Tourette's free. I hope we never have to begin that journey with Ian; but I am so grateful that I can be home to enjoy him now.
"Many Faces of Max"
1 comment:
I've had a handful of students with tourette's over the years and it is such a challenge, especially as they enter into puberty and question medicines, behavior, lac of control, and who they are. It's particularly frustrating to have the medicine control some symptoms but at the same time highlight others, especially in the case of calming tics but increasing symptoms of ADHD. It's a hard journey, but know that he can cope, with proper support.
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