Saturday, October 22, 2011

A Dad's Perspective: Painful Tics and a Lack of Understanding

Our son has developed a tic where he licks/spits onto his upper arm (clothed or not) and then wipes his mouth with the length of his arm (similar to how a child might wipe their runny nose with their sleeve). He does this very frequently, and especially when reading and doing schoolwork. And it's to the point where the skin around his mouth has become extremely chapped and peeling. Having Tourette's myself, I know how frustrating my tics can be, but I'm amazed at how well he takes his tics in stride. But I can't imagine anyone looking at the resulting skin abrasions and thinking that someone would voluntarily perform these actions to themselves. So it was to my great surprise, and extreme anger, when our son informed us Friday that a substitute teacher had gotten on to him for doing his tics, saying something like "you'd better stop licking your shirt." And that this continued even after he told her this was a tic. And I know from my own experiences that this only makes the tics worse.

It seems like just when we're starting to make headway with the school and they're starting to understand our son and his condition, something like this happens and my confidence drops. I'd like to think this will get easier as he is better able to articulate his needs to his teachers, but at this point, I'm not too sure that'll be the case.

If there is one thing you should know about Tourette's, it's this:  People with Tourette's cannot stop their tics any more than you can stop a sneeze.  You may be able to suppress the urge for a while, if the urge isn't overbearing, but eventually, it's going to happen.  And the more you suppress it, the bigger it's going to be once it does happen.  The best thing to do if you're around someone with Tourette's is to just ignore the tics. It may not be easy sometimes, but it's not easy for the person doing the tics either.

Thursday, October 20, 2011

The Drug Catch 22

All traditional medication  for ADHD have disclaimers that warn you not to take stimulants if you have Tourette Syndrome. They will worsen tics and slowly turn you into Skeletor. But if you don't take stimulants, you'll have to take nonstimulants, which will make you as paranoid and anxious as a crack addict and become convinced that everyone is going to kill you. Since the tics are now constant and you have become mentally unstable, you will be prescribed antipsychotics, which will make you gain massive amounts of weight, could potentially give you diabetes, and may cause long term cognitive dulling. This is the neverending cycle of trying to treat both Tourette's and ADHD.
Perrin started taking medication at 5 years old. I was very hard core anti-meds for years, but I got an opportunity to observe him in preschool, and the behaviors I saw made me cry. He was unable to stick with any task for longer than 30 seconds and ran around the classroom with no rhyme or reason. Teachers found it impossible to teach him, and by kindergarten, he was unable to maintain focus long enough to learn the alphabet. I couldn't stand by and watch him flounder, so we put him on focalin for his ADHD. Over the next 9 months, he became thinner and thinner until we could see his rib cage. He rarely ate, and he lost a lot of that joy that our Perrin has. We also saw a huge increase in his OCD symptoms and tics. He was chewing large chunks of skin off of his fingers, and we had to keep them bandaged, so he couldn't hold a pencil.  In school he would gather up all the papers in the room and tear them up. He became obsessed with what John and I ate for supper and repeat the same questions over and over again until we gave him the answer he wanted, which was not always the obvious answer.
In January 2009, we tried prozac in the hopes that some of his aggressive anxiety would be helped. What we actually saw was mania so severe we had to take him out of school for a week. The first evening of mania was a nightmare. He jumped off his bed and hung from his ceiling fan. He jumped up on his window sill and tried to push the window out. He ran around the house smashing things and laughing this insane laugh that frightened me to my core. He looked and acted like a cornered animal for over 24 hours, and I can still vividly recall trying to hold him down in the bathroom floor so he wouldn't hurt himself and thinking he was going to break my arm. We stopped all meds.
That was when he was diagnosed with early onset bipolar disorder and prescribed risperdal, which is an antipsychotic that is often prescribed for people with schizophrenia and seizures. To this day, almost 2 years later, I credit this medication for saving our lives. For the first time, he was able to function in a classroom without leaping off of desks and biting his teachers. I was no longer getting phone calls that he had to be restrained or that he had peed in the middle of the classroom floor. Over the next year, he was mostly normal. And by normal, I mean functional. However, as so often happens with antipsychotics, he began gaining a lot of weight. He was eating constantly to the point where we had to put locks on the cabinets and refrigerator so he didn't sneak food when we left the room. My once highly energetic and athletic boy had become lethargic and physically awkward.
It was at this time that he was spending more time outside of the special ed classroom and interacting with his typically developing peers. He was behind quite a bit academically since kindergarten was a useless year, but he was finally learning. He could write his name, and learned the alphabet. He was even beginning to read and memorize sight words with the other 1st graders.
So he was emotionally stable now, and we had our happy kid back. He was also 15 pounds heavier, still had almost no impulse control, and couldn't focus long enough to read a 10 page beginner book.
Over this last summer, we tried focalin again, which increased his tics again. We put him on tenex to help ease some of the tics, and he became paranoid and angry. He hit kids for coming too close to him because he swore they were trying to kill him. He thought there were strangers coming in his window to kill us all. We started a new ADHD medication, which caused him to rub his face on his shoulders so hard it left his cheeks red and raw. We increased the risperdal to help with that tic. Now that he's back on stimulants, he has lost all the weight he gained from the risperdal, so he's now extremely skinny again.
We are now at the point with the current meds where he's able to complete his schoolwork, but he's not bubbly anymore while he's on it. He is just here. He wakes up so hyper that he growls and can't sit still long enough to finish breakfast, and then 3 hours after he puts on his Daytrana patch, he's a completely different child. He's serious and never smiles. His tics are so complex that it takes several minutes to get through each tic. He struggles so much with his mood and gets very angry very quickly. When they wear off, he again returns to the hyper, growling child who makes constant explosion noises and can barely carry on a conversation, but he's happy.
So this is the cycle of medications a child with Tourette's sometimes has to go through. There is no medication for Tourette's, and every psychiatrist we've had has just guessed at what may work. It's a constant tweaking of dosages and hoping each time that it will help. I have no idea what long term effects any of these experimentations will cause him, and it pains me that I have to rely on guesswork and a medical community that still doesn't know how to fix it.
But, at the end of the day, after the pills have been swallowed, and the red patches of skin that cover Perrin's back from the Daytrana are slathered with lotion, Perrin smiles and says "I had a great day with you today." And that's why we keep fighting. For more great days.

Wednesday, October 19, 2011

My man

I always struggle with putting my feelings for my husband into words that can fully embrace what he has meant to me. For those who know me well, it's no secret that when I met John back in 1999, I was at the height of my mental instability. I wasn't diagnosed with bipolar disorder until after Perrin was born, but there were obvious signs that I was unwell. I was a girl in tremendous pain, both physical and emotional. I had been discharged from the Army after a year of the worst hell I can imagine, and I felt like I had failed at being human. I had made way too many major life decisions in a very short time, and my edges were peeling. However, in the week that I met John, I was in my manic pixie party girl phase, and life was just about finding the fun and excitement in a desperate attempt to keep the crazy at bay. I believe that had I not been manic, I probably would've never caught his eye, so I am thankful for my bipolar brain for that bit of serendipity.
John changed my life. He was this mellow 20  year old guy who took himself way too seriously, but he swooped in and gave me a quiet mind for the first time in my life. He cleared up the muddles and loved being alive. He found this flicker of life left in me and ignited it. He helped me quit drinking excessively and gave me hope that allowed me to stop taking so many painkillers. He helped me face the scariest of my demons and was a safe haven, a warm place for me to fall. And I fell many times. I still fall now and again. And he continues to catch me. My crazy is caged, but when it bats against the walls, he helps me tell the monsters to fuck off. He is my anchor in the storm.
He is the most amazing father that a child could hope for. He doesn't hold back his love and affection for our son, and seeing that unconditional adoration in his eyes when Perrin hugs him is what I live for. He is the type of man that all boys should aspire to become. He can actually empathize with our son when his tics are bad or he's feeling sensory overload. They have a kinship that is undeniable. I feel unbelievably blessed that this is the man who chose to be mine, who chose to be the father of my child.

Monday, October 10, 2011

A Dad's Perspective: The Contagious Tics

One thing about Tourette Syndrome that has always intrigued me is how thinking/talking about TS or being around others with TS will cause my tics to increase. I recognized this very early on, when talking about my tics would markedly increase their frequency and intensity, or attending a TS support group would have similar affects. I've always just taken this as a constant, and have heard from others with TS that they have similar reactions.

But it didn't just end there. I discovered that, after spending significant amounts of time together, my wife and I start to "steal" each others' tics. For the most part, we have different tics, and, as is typical with TS, those tics change over time. However, sometimes when one of us takes on a new tic, it's something that the other of us has been doing for some time. We've made it a joke, usually claiming "hey, that's my tic - give it back" upon noticing the other "stealing" a tic.

In the last couple years, as we been paying particular attention to our son's tics, I've noticed a new phenomenon in myself. As my wife sees new tics developing in our son, particularly if it's one that has the potential of being a distraction in school or causing physical harm, she'll describe the new tic to me. What I've found though, is that if she also acts out the tic, I almost always start doing the tic myself. Sometimes it just one or two times, sometimes it's for much longer periods, but it seems to only be when she reenacts them and not when she just describes them verbally.

It really is strange how the mind works.