Katherine's condition continued to change and some of the appointments we had been waiting for began to happen. In January, she had her EEG which only showed that their was no seizure activity during the EEG. In February, we finally got in to see a pediatric neurologist and we finally got a diagnosis. Katherine had developed Tourettes.
We were so glad to finally know what we were dealing with! But a Tourettes diagnosis was also very unwelcome news. It was yet one more poorly understood and incurable neurological condition to deal with.
The neurologist told us to research everything we could about Tourettes and then said to remember that it could all be different for a child with autism. He told us that Tourettes often gets worse up until around age 12. We couldn't believe it. Seriously! Could this really get even worse?! For the next 4.5 years?! And that Tourettes symptoms often improved during the teen years and sometimes disappeared by the early 20s. So at least we had that to hold on to!
We left that appointment without any prescriptions. Life was hard but we were managing, at least that's what we told ourselves. We were afraid of medication because Katherine would be unable to give us feedback on what effects she was experiencing so we were resolved to go without it as long as we could.
As spring arrived, things continued to get worse. We had learned how to manage better as a family. We were finding more balance between Katherine's needs and everyone else's needs but she was increasingly disabled. Her tics became more and more frequent and more and more intense. Her hands were covered with scratches from where she had raked the nails of one hand over the back of the other hand. She smashed one foot into the other foot as hard as she could so often that her feet were bright red all day every day. Her little face contorted and spasmed. She screamed at top volume and pitch such that her throat had to feel absolutely raw. Her own body was torturing her well over a hundred times a day.
In desperation, we called her neurologist and, after discussing the situation with him, decided to start her on guanfacine. Oddly enough, there are no medications developed to help Tourettes. All the medications used to reduce Tourettes symptoms were originally developed for some other purpose but have a side effect of reducing ticcing. Unfortunately tic reduction is not their only side-effect.
We started her on 1 mg on April 1st, increased her dose another 1 mg on April 27th, May 10th and the beginning of June. Guanfacine is a long-acting drug and it would take about 10 to 14 days for each change of dosage to stablize into it's final effect. With each new dose she would be super groggy for a few days and then as the grogginess decreased her ticcing would begin to decrease. By day 4 or 5 she had over 90% reduction in tics. The results were so dramatic it was like she was a completely different child. She was so mentally present and interactive and joyful. It was like she had been released from prison, and in a very real way, she had been.
After a few days of freedom the ticcing and grogginess would start to creep back up. We had to increase her dose 3 more times throughout the spring and each time the pattern would repeat itself. So the entire spring was a roller coaster of grogginess and variable tic levels. By the time the final dose stabilized, we had about a 40% reduction in tics and a huge amount of grogginess. She was napping every day and it had been 4.5 years since she had napped. But a sleepy sissy was far better than a ticcing sissy for her and for us.
Katherine Dancing in the Rain
Summer 2010 - before her neurological hurricane
Showing posts with label Moving Target. Show all posts
Showing posts with label Moving Target. Show all posts
Monday, December 19, 2011
The Moving Target: Before Diagnosis
Since Katherine's Tourettes began she has been a moving target. Before she began taking meds, the tics were continually getting worse or there were new tics or new triggers for old tics. And we were constantly looking for new and better ways to help her.
When Katherine's only problem was autism, her existence was pretty stable. Her sensory needs stayed pretty much the same. She liked to spin and look at things from a very short distance. Her language skills changed gradually and completely in conjunction with what we were teaching her. Her motor skills were fantastic and her food tastes pretty predictable. Pretty much any significant changes in her could be traced to her environment and managed with behavioral teaching.
But after her additional neurological issues began to develop in the June of 2010, that was no longer the case. Her Tourettes symptoms started small and we had no idea what they were. Her first tics were just mouth and arm movements. As summer turned to fall, her tics became much more dramatic. By mid-September her tics were already substantially more intense than what most people with Tourettes ever experience. We continued to try to manage it behaviorally. We didn't know it was a medical issue. We didn't know it was Tourettes and, as with most tics, her movements seemed intentional and often occurred at times that reinforced that perception.
The behavioral techniques weren't working. We ignored the ticcing and rewarded her for not-ticcing. We tried using successive approximation. We finally, in late October, in desperation, we started giving her consequences for ticcing. We didn't know that the movements were involuntary! Oh that poor little girl! Her own body has turned against her in very intense ways. She must have been frightened and confused. And then the people she trusted and counted on to help her began punishing her for doing the very things she already didn't want to do as if the tics themselves were not punishment enough.
She began to lash out at us. When tics come in clusters, she would tic for 5 to 10 seconds and then have 1 to 2 seconds of reprieve. She had control of her body during those two seconds and she began to turn toward the closest adult such that her blows against her own body were hitting that adult too. Inside she must have been crying out. Why aren't you helping me?! Why is this happening to me?! Her tics were things that would badly frighten ANY child. How much worse must it be for a child who doesn't have the language skills to take understand an explanation or to be able to express her feelings about what was happening to her?
By December, we began to see that the tics were involuntary. That she hated ticcing. And we began to comfort her instead of punishing her. She was still miserable, the poor little thing, but at least we were now on her side. She responded almost immediately by making every effort not to hit or kick other people.
We continued to limp through the rest of the year without any answers. She had blood work and her first appointment in a set of referrals to new specialists but they yielded nothing. She was miserable and so was our family. Life was revolving around Katherine in a way that it never had before. Managing Katherine's tics was the relentless purpose of our existence. We still managed to go through most of the motions of a normal family. We had to try to live as normal a life as possible under the circumstances but the burden was enormous and pretending things were okay became harder and harder.
When Katherine's only problem was autism, her existence was pretty stable. Her sensory needs stayed pretty much the same. She liked to spin and look at things from a very short distance. Her language skills changed gradually and completely in conjunction with what we were teaching her. Her motor skills were fantastic and her food tastes pretty predictable. Pretty much any significant changes in her could be traced to her environment and managed with behavioral teaching.
But after her additional neurological issues began to develop in the June of 2010, that was no longer the case. Her Tourettes symptoms started small and we had no idea what they were. Her first tics were just mouth and arm movements. As summer turned to fall, her tics became much more dramatic. By mid-September her tics were already substantially more intense than what most people with Tourettes ever experience. We continued to try to manage it behaviorally. We didn't know it was a medical issue. We didn't know it was Tourettes and, as with most tics, her movements seemed intentional and often occurred at times that reinforced that perception.
The behavioral techniques weren't working. We ignored the ticcing and rewarded her for not-ticcing. We tried using successive approximation. We finally, in late October, in desperation, we started giving her consequences for ticcing. We didn't know that the movements were involuntary! Oh that poor little girl! Her own body has turned against her in very intense ways. She must have been frightened and confused. And then the people she trusted and counted on to help her began punishing her for doing the very things she already didn't want to do as if the tics themselves were not punishment enough.
She began to lash out at us. When tics come in clusters, she would tic for 5 to 10 seconds and then have 1 to 2 seconds of reprieve. She had control of her body during those two seconds and she began to turn toward the closest adult such that her blows against her own body were hitting that adult too. Inside she must have been crying out. Why aren't you helping me?! Why is this happening to me?! Her tics were things that would badly frighten ANY child. How much worse must it be for a child who doesn't have the language skills to take understand an explanation or to be able to express her feelings about what was happening to her?
By December, we began to see that the tics were involuntary. That she hated ticcing. And we began to comfort her instead of punishing her. She was still miserable, the poor little thing, but at least we were now on her side. She responded almost immediately by making every effort not to hit or kick other people.
We continued to limp through the rest of the year without any answers. She had blood work and her first appointment in a set of referrals to new specialists but they yielded nothing. She was miserable and so was our family. Life was revolving around Katherine in a way that it never had before. Managing Katherine's tics was the relentless purpose of our existence. We still managed to go through most of the motions of a normal family. We had to try to live as normal a life as possible under the circumstances but the burden was enormous and pretending things were okay became harder and harder.
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