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.

Not one, but two

I know I haven't posted here very much recently.  There has been a lot going on that has kept me from posting, but I've also kind of avoided posting anything until I could give some information that I didn't want to post until I knew for sure.

I'm pretty sure that I've mentioned before that Tourette syndrome can be hereditary.  While there are cases where it seems to come out of nowhere, more often than not there is usually someone in the family (somewhere along the lines) that has had TS or at least tics.  It's also not uncommon to find out when one of your children has TS that a sibling has tics or TS.

That has ended up being the case in our home.  Our seven-year-old son, Little Man, was diagnosed with Tourette Syndrome this morning.  And so our journey begins of raising not one, but two children with TS.

No one "at fault"

I am sorry that I haven't been able to keep up with the daily blog posts that I started out writing for Tourette Syndrome Awareness Month.  Life has gotten in the way, as it tends to do sometimes.  We've had trips to the pool, birthday parties, and softball tournaments filling up our days since school has gotten out, and there hasn't been much time for me to sit down and write.  I did want to take a little time to write about something that has been weighing on my mind, though.

Tourette Syndrome can be a spontaneous thing, appearing out of nowhere in a patient that has no known family history of Tourette Syndrome.  Sometimes, it can come on with strep infections, in which case it would likely be PANDAS.  In many cases, however, there is a genetic link.  Heredity does seem to play a role in many TS cases.  However, this does not mean that anyone is "at fault" for their child having Tourette Syndrome.

Recently, a relative made a comment about which side of the family was "at fault" for Monster Man's TS.  This came after another relative started showing signs of having TS, as well.  The comment really grated on my nerves.

The truth is, no one is "at fault" for Tourette Syndrome.  There is no one to blame, and there should be no one to blame.  Sure, TS has its ups and downs; but doesn't most of life?!  While it can take some adjusting to, and the comorbids can sometimes be hard to deal with, Tourette Syndrome can also be looked at as a gift.  That's exactly how we choose to look at it.

Thanks to Monster Man's diagnosis, our eyes have been opened to so many things that we never would've known.  We still would've fallen into that trap that the media wants us to believe, that TS is just the "cussing disease".  We wouldn't have come to know that there is so much more to TS, that coprolalia only occurs in a small percentage of cases.  We wouldn't have come to meet so many new families that are experiencing the same daily struggles (and triumphs) that we are experiencing, friends we've made online and through Camp Twitch and Shout.  We wouldn't be challenged to work so hard to fight for acceptance for other children with tics even worse than Monster Man's.

Most importantly, though, is the fact that Monster Man wouldn't be the person that he is without his TS.  He wouldn't be the 'quirky' little boy that we've watched grow up, always teaching us to think outside the box.  He wouldn't be the little boy that taught us to answer every "Why does he do that?" with "Because he's Monster Man" when we had no explanation.  He wouldn't be the boy that taught us that being so different can be so much more fun.

We are blessed to have Monster Man just the way he is, and he feels blessed to have been given the gift of TS to open his world up to a whole new group of people that he wouldn't have known otherwise.  He has told us that he thinks that his highly vivid imagination comes from his brain working differently (something I've heard from other ticcers as well).  We do not feel that there is someone to "blame"; but if there was, we'd like to thank him or her!

Gotta wonder

Knowing that Tourette Syndrome can be hereditary, it's hard to look at Angel Baby and Little Man without wondering if they, too, might have Tourette Syndrome like Monster Man does.  What makes us wonder even more is the fact that we know that both Angel Baby and Little Man have issues that can be comorbid with Tourettes.

Angel Baby, like Monster Man, is starting to go through puberty - a time that can increase the symptoms of TS.  While she has always had sensory issues (she and I both have a lot of problems with certain textures and sounds) and some problems with anxiety, we've started to realize that some of her other behaviors are actually tics.  She has recently started chewing on the inside of her lip more often, too, and she recently sang in a school competition while chewing her lip throughout the entire song.  She has always had a tendency to have temper tantrums, as well, and never outgrew it as she got older despite our best efforts to curve this behavior.  Things we previously had related to other health issues she's experienced are now being looked at in a new light, and it's hard not to think that she could have TS like her brother.

Little Man is much younger (5 1/2 years younger than Monster Man), so we don't see a pattern of behaviors changing for him like they have with his brother and sister.  We have, however, had to accept that he has OCD.  We kind of joked around about it before, laughing at how picky he was about how the velcro on his shoes was lined up or commenting on the way that he'd sort his M&M's by color before eating them, even when he was too little to know his colors.  Grocery shopping used to be a challenge if Little Man was with me; he'd straighten all the shelves within his reach while I was picking items off other shelves.  A trashcan lid that was out of place or a bottle of ketchup not standing in the right direction in the refrigerator could lead to a major meltdown if he wasn't given the opportunity to correct the situation immediately.  He's recently started having to have his shoes just perfect - not too loose, not too tight, and the velcro or shoelaces have to be done perfectly as well.  Last week, he decided to wear sandals (with 3 velcro straps per shoe!) and he spent over 15 minutes getting his shoes to feel and look right before I finally convinced him to just get on with our day (to which he actually started crying because I wouldn't let him finish his task!).  The only complaint his teacher has about him is that he can't seem to speed up his schoolwork because he takes so long trying to get each line of each letter perfect.

OCD, anxiety, tantrums that could equate to rage... They can all be comorbids to the tics of Tourette Syndrome.  It's so hard not to wonder if we're seeing signs of things to come with our other two children.