Sometimes Tics Can Be Mistaken

Sometimes, it is easy to explain tics as being other things.  Throat clearing, sniffing, blinking... All easy to mistake as being allergies.  In fact, it's exactly what Monster Man started off with, which is why it took a while for us to realize that he had more going on than just simple allergies and a few 'quirks'.  We were lucky when it came to Little Man because we knew what to look for, and his tics started off a little different.

Angel Baby, our oldest, has had severe allergies since she was a baby.  Environmental allergies, allergies to some foods, allergies to meds, allergies to dyes... She has a rather extensive list.  Her skin has always taken a hit, largely due to her allergies.  Her skin would get itchy, she'd scratch, she'd get sores that would get infected... She has had a series of prescription ointments for her skin for the last several years.  The battle to keep her skin healthy has been a long, stressful one.  It wasn't until recently, when I caught her picking at spots on her arm, only for her to deny doing so, that I began to realize that it was more than just allergies.  Sure enough, after keeping an eye on her (without her realizing it, of course), I discovered that she had a skin-picking tic.

The skin-picking isn't the only tic that was mistaken for something else.  She often rubs her nose, clears her throat, and sniffs, again often figured to be related to her allergies.  When it continued despite the absence of other allergy symptoms, it was easier to realize it wasn't allergy-related after all.

She's always had a dramatic side to her, so it wasn't a huge surprise when she started speaking with random accents.  She has a British accent and an extremely country southern accent, on top of her usual voice.  She'll often be talking in one voice, only to switch to the other mid-sentence.  We'd teased about the voices, calling the British accent Penelope and the country accent Gretchen.  When we realized that just saying the name while she was talking would trigger the accent to change without her even having time to think about making the switch, we realized that the accents, too, were a tic.  In fact, there are times that she actually gets frustrated when she wants to speak normally but one of the accents comes out.  It takes real effort on her part to NOT speak with one of the accents, rather than her having to try to speak with them.

We've known for a while now that we were dealing with TS with her, too, though she has not yet seen the neurologist for an official diagnosis.  We were leaving it up to her, actually, since she is almost 16 and her tics are so mild that they hadn't caused her major frustration (with the exception of the skin-picking, which is finally starting to go away).  She didn't want to get the diagnosis for herself, and we were trying not to think too much of it.

Unfortunately, Angel Baby's tics have gotten much more severe in the past week or two.  She has developed a neck tic that has become quite uncomfortable for her.  Watching her try to finish a meal, her neck jerking as many as 20 times a minute, has become very hard on us.  She has had such a huge change that it has come to the point that we know she'll have to go to the neurologist for an official diagnosis soon, and that we'll have to find the right treatment for her since she is dealing with a lot of neck pain as a result of this tic.

No more mistaking the tics as something else in this house.  It's time for us all to finally accept that all three of our kids are dealing with their own struggles with TS.

A Little Control

After a rage-filled night at the ball park on Friday night, I was beginning to get a little desperate to help Monster Man find a way to control the rage.  Since I coach his team, I have to be at the ball fields for every game.  Since my hubby is working long hours, Monster Man has to be at the fields with me.  And since softball is one of the few things he looks forward to all week, Monster Man does not sit out at the games.  There is no leaving him home when he's had a bad day, no having him 'sit one out'.  I knew I had to find a way to help him have a calmer day at the ball park on Saturday.

I think I've mentioned before that the kids' current insurance will not cover anything for Tourette Syndrome.  I cannot get him the additional testing he needs for school, the therapy he needs to help him learn to control certain behaviors, or the medications he needs to help with the anxiety.  His pediatrician had previously prescribed something very mild that is similar to a stronger form of Benadryl.  In fact, Angel Baby has the same prescription for when she has allergic reactions.  In Monster Man's case, the medicine is supposed to be used to help mellow him out when his anxiety starts up.  We had never given it to him before because I'd never seemed to have it with me in cases when he ended up needing it, and I've had to talk him through controlling his breathing to help calm him down when I couldn't easily remove him from the situation.  I wasn't really sure how well the medication worked, but I decided that if it was supposed to help calm him down when the anxiety attacked, maybe it would help with the rage.

Before heading to the fields on Saturday morning, I gave him a dose of the medicine.  Within 30 minutes, he actually seemed happier than he had in days.  He was laughing and telling jokes with his sister, rather than yelling at her every time she even looked his direction (the way he had been for over a week).  When we first got to the fields, he wanted to love on me and kept giving me hugs rather than glaring at me and yelling over every little thing that didn't go his way.  During his game, he only had two minor setbacks, nothing compared to the experiences he'd had a week earlier.  He was able to calm down much quicker and to get back under control.  In fact, he told me that he felt more in control of his emotions than he had in a long time.

This particular medicine is not going to be a daily thing for him.  It is still going to just be used on days when he needs more help controlling his rage.  It now has a home in my purse, where I can easily find it and distribute it when he's starting to have a meltdown (hopefully before he goes in full rage mode).  It isn't a long-term solution, but I know it's there if we need it.  It's comforting to know that we have finally found something to help Monster Man for now.

In the beginning

We've always known that Monster Man was different. From the time he could talk, he always did things his own way. He didn't like pizza when he was younger, concerned about the pizza sauce getting on his hands (he had no problem with other foods covering him, oddly enough). He didn't like ice cream when he was little, either, choosing instead to have warmer treats than something so cold. Now, at the age of ten, he still doesn't like having milk on his cereal since he says it changes the texture. Those are just a few of the things we noticed, all centered around food, but there were many other things that have always seemed different.

Monster Man has always had an extremely active imagination. From shortly after his second birthday until well after his fifth, he believed that he was Santa. Not just believing in Santa, but truly believing that he was the man in red himself. He wore a red sweatsuit and Santa hat nearly everywhere he went, introducing himself to kids as Santa Claus. He spent hours on end 'practicing' flying his sleigh. He asked for 'real reindeer that can fly' for Christmas. He took imagination to a whole new level, so much so in fact that we often heard comments about whether or not he was normal.

Over time, we came up for a simple answer for why he did things the way that he did. "Because he's Monster Man." We used this answer for just about everything he did. Why did he have to create crazy voices and repeat lines from movies while we watched them? Why did he insist on always wearing his socks inside out? Why did he have to have his food cut just the right way, including having his PBJ cut into four triangles? Why did he get so easily upset when he couldn't get things done just right? Why was he such a perfectionist with his school work? Why did he seem so quirky? Why does he seem like such a spazz? All these questions, and probably a thousand others, were answered the same way.

Out of all three of my children, Monster Man always seemed to be the sickest. What might be a mild cold for Angel Baby would turn out to be a major illness for Monster Man. I remember waking up one morning when he was five weeks old and finding him blue. It was just the start of many respiratory problems he has faced, especially over the course of his first eighteen months of life. During that time, he spent a total of fifteen months sick, with only a few healthy days scattered here and there between illnesses. RSV, bronchitis (three times), and pneumonia (twice) plagued the poor baby, though he rarely let them bring him down. As he got older, he still continued to get extremely sick. He fought off numerous cases of strep, scarlet fever, and ear infections. He ended up with mono in kindergarten and Lyme disease at the end of second grade. It seemed like if anyone was going to get something major, it was going to be Monster Man.

Somewhere around the time that he came down with Lyme disease, Monster Man started having problems with what we thought were allergies. He blinked a lot, really forceful blinks that looked like his eyes were really bothering him. He started clearing his throat all the time, as well. We started treating him with Claritin, hoping to help ease the symptoms he was experiencing. Angel Baby has severe allergies, so it only seemed right that the symptoms Monster Man was experiencing were related to allergies as well. Unfortunately, the more we worked to get rid of the symptoms, the worse the blinking and throat clearing got.

I finally mentioned the symptoms to the pediatrician this past January, nearly two years after the first of the symptoms began. It wasn't until then that we realized that these weren't allergy symptoms at all. Instead, they were tics. He was referred to a pediatric neurologist, though his doctor told me it didn't necessarily mean that he had Tourettes. It took us nearly 10 full months to get an appointment that stuck (the appointments kept getting rescheduled by the office), and by then Monster Man had developed many other tics. In fact, we had seen a total of almost 20 tics by the time that he was finally seen and diagnosed.

And so begins my blogging journey as we experience Monster Man's struggles and triumphs with Tourettes Syndrome.