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Whiplash

How is it that the other day, after one of my oldest boy’s good days, I was all, Ya Neuroleptics? NO WAY. Not for my kid. We’re going with meditation practice, a little consultation with a therapist, and maybe some light-touch healing, and we’ll ride out the next few years.
Then yesterday?

CAN WE BOOK THAT LOBOTOMY PLEASE?

Kidding. (Mostly…) It’s been a hellish month for him, and take my word for it, that’s saying something. More and more severe tics, crushing anxiety and depression, self-injury, self-loathing, and combativeness, not to mention having to rearrange the packets of cookies at the counter at Starbucks to the point of making them all fall over. He’s miserable, and there is precious little we can do, it seems.

Without going into brain-freezing pharmacological detail, we’re a bit up the creek. Tourette’s is a bitch. It rarely presents simply as tics; more often, kids with TS also have other things, in varying degrees: ADHD, obsessive compulsive disorder, anxiety and depression. Most common age of diagnosis is 7, and it peaks at age 12. You know, along with PUBERTY. Cause puberty is such a pushover on it’s own.

The mess with complicated TS is that there isn’t a medicine that treats the actual condition, only those that can address the peripheral symptoms. With kids like Liam, though (and they make up about 60% of those diagnosed) the constellation of symptoms means that the best and most effective medication for one condition may aggravate another. It can mean there are few options.

We resisted any medication at all for as long as we could, and then only went for the least invasive and affecting.  But after three years, we’ve come to the point we hoped we wouldn’t.

There are three classes of drugs which can be used in TS kids: those with high-efficacy and low incidence of side-effects; those with high-efficacy and relatively high incidence of side-effects; and those with comparatively low-efficacy, but high side-effects. We’re at the point of staring class 2 in the face, and it’s stone-cold scary. Neuroleptics are hard-core, and some of the potential side-effects can be permanent.

He’s often said he would take the tics, all of them, if he could only get rid of the emotional tidal wave that is his life. He said something to Rob and me yesterday: “I wish my life could be good again.”

“Your life was never good!” said Rob in good-humoured exasperation. Not the words I would have chosen, but I knew what he meant: Your life has always been like this – grueling and emotional and frustrating and overwhelming, and when you watch our baby videos and you see that lovely cheeky little boy mugging for the camera, it isn’t because that was your whole life; it’s because those were the moments we filmed!

We told him this; I’m not sure it made the right kind of sense. The fact is that in so many ways his life is good. We love him, he is safe, and strong, and clothed and he does archery and sees his grandparents and goes camping and eats ice cream and has more Lego than Denmark. He has a twin brother who is his best friend and he’s among the brightest kids his age anywhere. He loves deeply and loyally, and has a wicked, bubbling, unstoppable sense of humour.We tell him all this, too.

But when he gets upset, which is now so often it can be several times in a single day, we can’t leave him alone for fear of what he’ll do to himself. Often its a question of blocking whatever he’s using to hit himself in the head.

In the last two years, watching him struggle more and more with the crushing and explosive emotional attacks that plague him, it seems that the unique aspects of Tourette’s we’ve been trying to address are maybe not the root of this fight. It’s so hard to tease apart all the strands of what causes what; it’s fine to talk clinically about TS, ADHD, obsessive compulsive disorder and anxiety; but he isn’t a collection of charts. In him, they’re all swirled together like paint on a canvas. It feels wrong – blind somehow, to go down the road of the heavier duty medications without really knowing what is at the core of the trouble.

Rob and I just keep looking at this beautiful kid who wants so much to love life because that truly is his nature, only he’s shackled by his own mind and body. We just keep thinking and reading and searching for something out there that can help, because it simply has to exist. When he was in grade one, we were part of a group of families at Toronto’s Hospital for Sick Children’s Anxiety Disorders Clinic. The psychiatrist there ended up being the one, a year later, who made the initial TS diagnosis. We were then referred to the Tourette’s Clinic, but we’re thinking it’s time to get back in touch with the people at Sick Kids’. Maybe someone with a different perspective, a different specialty, might see in Liam something they recognize and can help.

So we’ll go forward. We’ll meet with the doctors at the TS clinic and hear what they have to say about the neuroleptics, and we’ll wait for an assessment at Sick Kids’. And we’ll just keep putting ourselves between our son’s head and the wall.

6 comments to Whiplash

  • Susan

    I am thinking of you all, always.
    love Sioux

  • Nomi

    As difficult as it is, Liam’s life would be so much worse if he didn’t have incredibly special, caring, loving parents with wicked senses of humour.
    Love you.

  • Heather

    A long time ago I had faith in Sick Kids and they saw us through. I have faith now that they will help Liam.

  • SHARRON

    I see you all on a not too distant shore. It is bathed in sunlight. Liam is a young handsome man. He is smiling brightly in a dance of thankfullness to his Mom and Dad and all who love and care for him and his brothers by being totally there for him when the relentless attackers now besetting his journey are held at bay and ultimately defeated.

  • Oh Man. To medicate or not medicate, that is the question. We’ve been down that road. We tried. We really, really tried. EVERYTHING. And the last thing was to try medication. I felt so guilty. And then I felt guilty for not trying it sooner and listening to the loonies who told me to TRY DIETS TRY EXERCISE TRY THIS BOOK TRY THIS THERAPY TRY TRY TRY.

    I will tell you we’ve been through a few neuroleptics. The tics got WORSE with Risperdol. In fact, it was so awful he now has major stimming issues three years later. But lately we gave Abilify a try and the only side effect we’ve had is that he smiles again, he plays again, he eats again, he hugs us again. No weight gain. No increase in tics or stimming. It’s heaven in a 2mg pill. THANK YOU JEEBUS.

    We’ve been on and off so many meds but when we find one that works, even if it is just a short while, it makes it ALL worth it. If you decide to try meds, I wish you the best of luck. You are clearly two dedicated, loving parents who will do anything for your children.

    PS – glad Rob told me about your blog! I enjoy it!

  • PL

    Regan, I’ve had your cookbook for years and I love it as much for the writing as the recipes (even if I’m not baking, I love to read about it!) However, I just found your website and have read about your complicated life. There is a support group for Tourette’s families held the 3rd Tues. of every month, at St. Leonard’s Church, 25 Wanless Ave.,near Yonge & Lawrence. You can find more info at:
    http://www.tourette.ca/connect-chapters.php?entry_id=3002

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