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.

Early signs of Tourette Syndrome

I often get asked how early on that I started seeing signs of Tourette Syndrome in Monster Man.  I always knew that he was a little 'different', but didn't quite know what was making him different until he was older.  Somewhere around the end of first, we do know that he started having some problems that we associated with allergies.  For a long time, we didn't realize that they could be anything else other than allergies, which he'd struggled with since he was a toddler.  For that reason, we're not really sure when the TS symptoms started and how many of his symptoms were TS related rather than allergy related.

It's with good reason that we so were so easily able to mistake signs of TS as being allergies.  Tics of the eye are often among the first motor tics, and the most common one is eye blinking.  Tics of the head and fact are often very common early motor tics.  Early vocal tics often include throat clearing and sniffing.  Monster Man had the eye blinking, throat clearing, and sniffing long before he had any other tics... all very common allergy symptoms.

There are also many complex motor tics that can be common closer to the onset of Tourettes symptoms.  These can include touching, thrusting of the arms and legs, and jumping.

It's important to remember that no two cases of Tourette Syndrome are exactly the same.  What can be early symptoms in some people may not show up at all in others.  Two people may share one or two of the same tics, but have a much larger list of tics that they don't have in common.  It's also important to realize that these early signs are just the most common, and that some people experience different tics than those listed early on.

A School Performance

Monster Man was in a performance at school yesterday, and it gave me a chance to realize something I had never noticed before. When he was up on stage, singing with the other students, he didn't have his usual eye blinking or throat clearing (or sniffing) tics. He was actually able to control them up on the stage, which really amazed me with how much he struggles to control them at other times.

He's always been a bit of a goof in front of a crowd. During VBS performances at other churches, Monster Man would be the one child rocking out on air guitar throughout the songs. When other kids are standing still singing, or even just swaying a little, Monster Man is the one that has to dance. Sure enough, while he wasn't tic-ing on stage last night, he was emphasizing words of the song with a swing of his arm or he was tilting his head from side to side to the music. It occurred to me last night that maybe, just maybe, these little antics are his way of controlling the tics. Most importantly, though - They kept a smile on his face!

I was so proud of Monster Man last night, watching him and knowing how hard he was working on the inside to keep his tics under control. Sometimes we take things like that for granted.

The evergrowing tic-list

I mentioned previously that Monster Man started out with two noticeable tics and that the list grew significantly soon after we realized what we were dealing with. Of course, he doesn't have them all at the same time. They come and go, sometimes increasing in severity while others seem to dissipate. They seem to come out of thin air, and some seem to disappear just as quickly as they developed.

Some of Monster Man's tics include:
- Forceful eye blinking
- Throat clearing
- Constant sniffing (he can even sniff and talk at the same time)
- Nose twitching
- Pulling his lips together on the sides while pushing out his bottom lip (kind of hard to explain)
- Taking 3 steps then kicking himself in the back of the leg
- Dragging his toes when wearing flip flops (he went through three pairs this summer before we finally figured out what was going on and had to make him quit wearing them so he wouldn't trip)
- When he gets half-way up or half-way down the stairs, he changes pace and dips down (we always think he's going to fall because of the loud thud it makes)
- Moving his arms in a waving motion, starting with the left hand up to his shoulder, turning his head, and then moving from his right shoulder down to his right hand (looks similar to a dance sometimes)
- Pulling up the left side of his face, almost like a half-smile that forces his eye closed

There are so many more, but these are the ones that come to mind right now. Of course, some are more complex than others. We're still working to identify what all triggers certain tics. The only real obvious ones we've discovered are the flip flops causing him to drag his toes and anxiety causing him to pull his lips together.

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.