Monday, September 11, 2006

Hind Sight is 20/20

Don't feel to bad for me. Yet. I might change that tune in a few years. We'll see.

Let me give you a timeline - the benefit of hind sight. And this is a long one folks.

The Boy was born in 2000. We knew he had renal reflux before he was born. Due to the regimine of antibiotics from the day he was born, he was on a strict anti-candida diet. Don't get upset. Babies have no idea you're limiting their sugar intake. Everything is new and exciting to their little taste buds. And it was a battle to get that point through to well meaning yet idiotic friends and family who insisted the baby needed to eat some cake. But I digress.

I mention all of this because I wonder if his early diet (which we pretty much stuck to until he was 3) has delayed the onset of TS or maybe made it less severe. But I'll get back to that.

So fast foward. The kid is brilliant. And that's not just his mom squalking like some grandmother insisting her tone deaf grandkid will be the next American Idol. Ask anyone who's met him. Ask all his docs. I mention this because I think his smarts are helping him deal with his TS.

In the summer of 2005, The Boy figured out the concept of a punch line and accompanying snare shot. "Take my wife...please!" (bah-dum-bum!) So he started telling jokes and punctuating the punch line with a vocal snare shot that sounded like a weird throat clearing thing. This morphed into the sound being made pretty constantly. I did what most parents would have done and offered more water and chalked it up to allergies. This sound continued off and on for the next year and still makes appearances.

Over the next year, we moved from New England to Texas. Once we got here, we didn't really see anything strange from The Boy - but I will confess here - my husband and I could easily have missed a LOT. We were busy for the 1st 3 months. Busy having a "what the hell have we done?!" melt down. The Boy survived - thankfully.

In April 2006, we noticed a hand movement we labelled "Spidey Hands". He would move his fingers against his palm almost like he was drumming his fingers on the palm of his hands. But it often looked like Spiderman trying to shoot this...

Anyway, I didn't think much of it. But it started to be constant. He'd be writing or typing on the computer. He'd put his pencil down or stop typing - like to think. And while was thinking, he'd do the Spidey Hands thing. No biggy. But then we noticed he'd hold the chain of his swing with his inner wrists so he could do it. You'd feel his fingers wiggling while you held his hands to cross the street. He'd do it absent mindedly while watching TV or doing anything. And that was the first thing that made me raise an eyebrow.

At the end of kindergarten in May 2006, I mentioned it to his teacher. She used to work with special needs kids and said the only other time she'd seen that was with autism. This freaked me out enough to call my cousin Kendra who has a wealth of knowledge on special needs kids. She put the autism fears to rest due to age, his incredible social nature, etc. But what was Spidey Hands? Who knew. It eventually grew less and less and we chalked it up to a "phase".

July 2006 - around his 6th birthday. That was the red flag. The Boy is incredibly facinated with language, letters, numbers, etc. So when he came and told me that, sometimes, he has to say a letter sound all day, I assumed it was a cool game he invented. So he told me, today it's R. And began saying "er-ruh" and using as many words with the R sound as possible. Still cute and inventive. But then he continues saying it ALL day. And it morphs from "erRUH" into this kind of strange rolled R sound so it came out more like "er-DUH". Like the word "great" became "ger-date". The R/D sound that came out had almost a tongue-clucking quality to it. Like slapping the tongue down hard to get the sound. So I asked him, does making this sound feel good in your mouth? And he said, "Well, my body WANTS me to make this sound. And I don't really feel good until I do." Yah. Bells, red flags, the works. That's just not "normal". I told him that it probably had to do with his love of language and letters and not to worry about it - it would pass. He calmed down. I panicked.

Over the next few days, the W sound evolved and it was a big cheek-filled "WUH!" sound. It was so compulsory sounding at times, it freaked me out. But I stayed calm and reassured him he was ok. This sound upset him because he seemed to not be able to control when it burst forth. We avoided a large list of sounds but saying things like, "Hey, you already have the R and W sound....let's not add the T sound right now? Do you think you can control that?" and he usually could. And keep in mind, this is all developing over a span of maybe FOUR days.

I mentioned it to my birth-mom on a call because I was wondering if The Boy had some kind of OCD. I mean, his actions all seemed to compulsory and repetative. I know so little about any of these things, it was the only thing I could put a label on. I described things to her and she said it sounded a lot like my half-brother when he started having Tourette's symptoms. That floored me. I had been told he had TS but it hadn't stuck. I mean, I didn't know TS from a fly and he's a normal adult now so I probably just let it pass into the ether. The only thing I DID know about TS was from a documentary I had seen years ago on a worse case adult scenario that involved brain surgery to control. So yah, I freaked because I'm very good at worrying about things that aren't confirmed.

A few days after this all began, The Boy had a regular checkup with his pediatrician. Dr Amy (as my boys call her) rocks. I didn't mention it because I wanted to see if she noticed any of his habits. She did. At the end of his checkup, she asked, "Is there anything you'd like to ask me? Maybe in another room?" Like I said, she rocks. So we discussed it and I told her my fears of Tourette's and it being in my genetic family, etc. She suggested I keep a log and let her know if we wanted to pursue a specialist of some kind.

So, after a week of watching his symptoms wax and wane, my sis-in-law said, man, get that doctor on the phone. Don't wait. Dr Amy called me before I could call her. She referred us to a psychiatrist. That word sent cold down my spine. I have no great faith in psychiatrists. I think of them as impatient pompous asses who throw perscriptions at you to get you the hell out of their office. And I was not about to medicate this beautiful mind (and yes, I'm aware of the irony of selecting that phrase). So I went in prepared for full battle. I was ready to go through the niceties until I had enough reason to take The Boy by the hand and walk out of there.

God rocks. He rocks BIG. He rocks even when my faith sucks.

I prayed my butt off and asked every praying person I knew to pray, too. God, just give me the right doctor for The Boy. Let her be someone we trust and know is ok.

God rocks.

We met Dr J and she was everything I prayed for. She restored my faith in psychiatrists. She is sweet and intelligent and knows how to talk to The Boy. She asked him all the right questions. I could see how she was eliminating the possibilies...ADHD...nope...OCD...nope...and so on. When she began talking to him, he was a wiggling mess. Once he trusted her, he was much more mellow. She confirmed that he had TS, with obsessive compulsive personality TRAITS. Not OCD. He also has signs of anxiety disorder which is comorbid with TS. So that's something we have to watch out for. She also suggested a non-med therapy. Cognitive behavioral therapy. He'll meet with a play therapist - she'll play with him. How cool is that?! She'll teach him to recognize the impulse feelings and either control them or divert them to a socially acceptable action. Like, the verbal or audible outbursts might be diverted to Spidey Hands under the table. Much more socially acceptable. And as a parent who wants to avoid all forms of rejection for their child, that sounded good to me.

So that diagnosis was August 30th. Since then, we've discussed the diagnosis with The Boy. I've had him read this awesome kids' newsletter from the Tourette's Syndrome Association. It's written by kids with TS for kids with TS. He asked if all those kids really had TS and I said yes. That seemed to really hit him - like he's part of something bigger - not alone. That was SO cool to watch. Then he asked if he could write one and they have an email address for just that. So he wrote the coolest email to the TSA. They replied that his write up will be in the fall edition in mid October. You can bet I'll have a link to that right here when it's out!!!

The Boy will tell you that he can control his TS. He's very positive and that helps me and dad, I think. Right now, his most noticable tics are exaggerated blinking and a kind of "clearing your sinuses snorting". The eye thing can also include rolling his eyes way up so that he has to look at you from under his eyebrows. It lasts for just a few seconds but it's rather odd to see if you're not used to it. Today, his exaggerated blinking and eye rolling was really bad. He had trouble reading with me tonight. So I read mostly to him. That gave me this tiny pang of sadness - because I know this can escelate as he ages. That fear is the thing that is currently haunting me.

Again, we'll just see.

Oh, the whole candida thing I mentioned way up top? There are multiple studies showing that being on an anti-candida diet can actually help lessen the tics. They feel the candida plays some role by messing up neurotransmitters. I don't have it all in my head but I've read enough to know that we're glad he has a great nutritional life habit already.

If you want a great nut-shell view of TS, this link has a great FAQ that sums things up nicely.

Thanks to you all for prayers and nice words.

My next updates will be much shorter. I promise.

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