Wednesday, July 26, 2006

"Tourette's is ruining my life."

J said that to me as we looked out from the third floor, over the railing, across the first floor of the California Science Center today. Children from summer camps across Los Angeles teemed below like red, blue and yellow water drops splashed onto a hot skillet.

"Can we go home?"

"Later."

Did I say I imagined improvement with the vocal tic? Yeah, I imagined improvement. He's got this loud "huh" thing going on so much he's gotten hoarse from it. At the museum today, people would turn and look at him, and he'd glare right back. At other times, he just looked down, eyes hidden behind thick hair, cursing under his breath.

Called the doctor and said, "WHEN will we see improvement with the Keppra?"

In a few weeks.

Called the doctor again and left a message on the machine, "Can I add Tenex to the mix since the Clonidine isn't doing much?"

Probable answer: sure but there still won't be much change for a few weeks.

Yeah, yeah, I get that but see I'm fucking desperate to help, desperate to ease the tough circumstance, desperate for the magic fucking pill to make this fucking thing GO AWAY.

"When's it gonna change, Mom, to something less noisy?"

"I don't know, baby, maybe you can try to do something else. I've heard some people can psych themselves into a new, different tic."

He's starting music camp on Monday, a new camp where he won't know the children and he'll have to deal with the explanations and possible rejections and possible misery. To tell the truth, I've got a stomach ache from all this. He's stressed, too, but he has no idea the agony his parents are in. As a parent, you want your child to be the "best they can be," and yet here he is in a virtually unchangable situation. Yeah, yeah, I know this could be worse. Thank God it's not cancer, or some other life-threatening circumstance, thank God he's here at all, yes, I get that.

But still. God damn it. I hide it though, I offer positive thinking to him. I say, don't get mad, just educate them. You're talented at the drums, you're going to make them forget the Tourette's.

"I hate this so much," he says to me.

Dinner tonight...pizza. There goes our good eating habits. Pizza and buffalo wings and something fried the place offers for free that you dip into ranch dressing. Positively deadly.

12 comments:

Tarakuanyin said...

This is so sad. I think, if you're a parent, it doesn't really matter whether it's something like Tourette's, which makes life so difficult for the child that your heart bleeds for him, or cancer, which is life-threatening. The outcomes may be different (and yes, cancer's outcome is usually worse), but still, the pain for you is real and wrenching. There's a "death" in illnesses like Tourette's too, the death of all those expectations of "normal" camps, and uncomplicated friendships -- or friendships at all, perhaps. You and he have to adapt in so many ways, and I can imagine the pain for both of you. And, as well, a kid with something like cancer is "visible" in a sense. A head bald from chemo brings sympathy. But tics like those of Tourette's aren't really understood by most people, and so you and J are always at risk of judgment. You're brave to get up every day and face the challenges with the humor and practical support that you reveal in your writing. J's lucky to have you as a mom.

Lori said...

Aw, bud...that's so tough, especially w/J being a teenager and going through all of the already-hard stuff that brings with it. I can only hope he'll still have fun at camp and that the new meds will help.

FreedomGirl said...

Thanks for stopping by and commenting on my blog. As you read, we are dealing with TS, too. Blaine is only 12, so we may have yet to see the full scope of her tics. My hope is that it won't get any worse. Hey, I can hope, right? It does not require meds at this time, and the doctor left it totally up to her if she wants to manage it that way in the future. Our doc is awesome. He speaks to her, not at her or about her to me. With Jr High appraoching, I hope she is able to handle the stress of being a teenager and that the tics do not worsen...its hard enough just being that age.

8763 Wonderland said...

Mmmmmmmm ... cheesy bread with ranch dipping sauce.

Adriana Bliss said...

Tarakuanyin, thank you for such a beautiful, sweet and understanding comment. Very good point about the particular difficulty with TS.

I hope so, too, Lori.

Freedomgirl, I was surprised and relieved to see your post, having found it through Technorati. Thanks for stopping by. There are probably some other things going on with J that are contributing to his tics - possibly he's having mood swings which will increase the tics. I'm glad you have such a wonderful doctor - that's how we feel about the psych doc we have. Not so thrilled with the neurologist - he's pretty busy and doesn't have patience with panicking mothers unlike the other who NEVER fails to call (and not charge) when I ring him. I'm glad your situation is under control...sounds like a good situation.

Dale said...

{{{Adriana}}}

Jean said...

Adriana, I'm so sorry. How shitty.

I have a friend with Tourette's - and four small children. She had to stop medication with the first pregnancy. The tics have never come back to any great extent. I guess the kids take all her attention and block them out, in the same way as many people with Tourette's can perform on stage without tics. In other words, you just never know - which is hopeful as well as frightening.

Lots of love to you and J and all of you.

Adriana Bliss said...

Thank you, Dale.

Jean, interesting about your friend - it's typical that the tics subside or lessen in adults. And thank you.

Richard Lawrence Cohen said...

Adriana, this is so painful to read. As a father I feel for him so much, and for you all. It's so hard, and yet sometimes necessary, to hide the full extent of your caring from the ones you care about. You're doing the right thing to give him positive thinking. And the hope is warranted: medication will work eventually, maybe in a few short weeks. Hold on, it will get better.

Shuana said...

I've missed reading your blog for a while. So sorry for the difficulties you are facing. It is heartbreaking when children suffer, and their parents.

Adriana Bliss said...

Thank you, Richard, so much. I think it's getting better already - it's just a bit agonizing to wait.

Thank you Shuana. :)

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