Wednesday, March 21, 2012

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.

Monday, March 12, 2012

Check-up Time

It was time for Monster Man's yearly check-up today.  In a way, he was looking forward to it because that meant he could get his physical for Camp Twitch and Shout completed, making him one step closer to the camp he loves so dearly.  All weekend, we talked about his check-up and needing to get the forms filled out for camp.  I wanted to make sure that he knew well in advance that we were going to the doctor because I know how he can get when it comes to things like doctor's visits and (dare I even say it?!) shots.  I didn't want him to feel like I'd blindsided him, taking him with no warning.  I figured if we talked about it ahead of time, he wouldn't be as anxious about it when it was actually time for the appointment.

Like even the best laid plans, my plans didn't quite work out, either.  I'd made the appointment for the middle of day, at a time when I knew that both Angel Baby and Little Man would still be in school.  With them in school, I'd be able to focus all of my attention of Monster Man.  Little Man, however, started getting sick over the weekend, and he ended up at the doctor's office right alongside his brother.  Little Man, it turned out, had bronchitis, so I was glad I decided to take him to the doctor, but it did mean I wasn't able to focus as much attention on calming Monster Man's nerves as I'd liked to.

As it turned out, Monster Man needed all the help he could get.  When we went into the first room, where he had his vision and blood pressure checked, he started getting worked up about having to have his iron level checked.  Once he found out he had to have his finger pricked, he started to melt down.  We were able to calm him down long enough to get his finger pricked and the iron tested, but that was about it.  By the time that we got into the room, he was in tears because he realized he was going to have to have shots.  I'm actually surprised that the family in the room next to us couldn't hear him raising his voice to announce that "You can give me my shots over my dead body.  You'll have to kill me first," and asking "Why can't they put me to sleep to give me my shots?"  I resorted to giving him one of his anti-histamine tablets, which we use to calm him down when his anxiety or his rage are acting up.  His pediatrician had not heard how upset he can get before, and she could hear him through the door crying that I couldn't make him take his pill and that I wasn't his boss.  Oh what fun we were already having at that point, and the doctor hadn't even walked into the room yet!

For the most part, the appointment itself went well.  Despite his anxiety level, he was able to make it through the appointment and through Little Man's appointment without losing it, right up until the moment when it was clear he couldn't hold off on getting his shots any longer.  At the point when the nurse entered the room, he started crying again, and it ended up taking another nurse holding one arm still while I held the other for the one nurse to be able to give him both of his shots.  It was only two shots, unlike the six that he just knew we were going to "kill" him by giving him.  They were over in less time than it took to give him his pill, not counting the time it took to get him under control long enough to give the shots.  It is heartbreaking to watch him fight so hard, especially since he gets so strong and hard to control!

When all was said and done, though, he looked up at the nurses and me and said "That wasn't so bad.  That was stupid."  He let me know multiple times over the next half hour that he felt really, really stupid for fighting so hard and getting so worked up.

He says that he won't be so worked up next time, but I'm not holding my breath with that one.  I've heard that from him before.  I think the anxiety he gets just builds up so much for him, and it makes the whole idea of shots seem ten times worse than they really are.

Tuesday, March 6, 2012


I originally wrote this article for the Tourette Syndrome Association Georgia Chapter's monthly newsletter a few months back.  I've made a few changes, but it's mostly written as it was in the newsletter.  This is the follow-up to my previous post, which was also written originally for the newsletter. I will share more of the articles in the near future. 


As I took clothes out of the washing machine tonight, I discovered two heads to Lego men had fallen out of a pocket and were stuck in the rubber liner of our washing machine.  It’s such an unusual find, but it’s also one that brings back memories.  The Lego heads, which I’m sure belonged to my youngest son, Little Man, have yet to be missed by my children.  That wouldn’t have been the case if they’d belonged to Monster Man when he was little.
                Most kids carry around a lovey of some sort for at least a short period of time in their lives.  When I think of loveys, I usually think of blankies, baby dolls, or teddy bears.  Monster Man, however, formed an attachment with an object that many people thought was crazy.  If you’ve ever seen Toy Story, you know that Buzz Lightyear loses his arm in one scene.  When Monster Man asked for a Toy Story Play-doh kit when he was little, I thought nothing of it.  When he ripped off the arm of the included Buzz Lightyear doll, I must admit I was a little concerned, but I did find it amusing… until he grew attached to Buzz Lightyear’s arm.
                The arm couldn’t have been more than an inch and a half in length, and was very narrow.  It was something that could easily be misplaced, and it often did when the kids would play in their playroom, emptying their toy box onto the floor and burying Buzz Lightyear’s arm in the process.  When toys were put up afterward, the arm would often get tossed into the toy box along with the other toys.  It wouldn’t present a real problem until Monster Man decided he needed the arm, usually at bedtime, and we’d begin a frantic search to find the missing arm.  There were even times that he’d wake up in the middle of the night to find Buzz Lightyear’s arm was no longer under his pillow, and we’d have to search in, under, and around his bed until the arm was found before Monster Man would drift off to sleep again.
                I’ve heard other people talk about having a back-up doll/teddy/blanket in case their child’s beloved lovey was to disappear.  I couldn’t see any way of having a back-up Buzz Lightyear arm, short of buying a whole other Toy Story Play-doh kit and breaking the arm off that one.  That’s exactly what we ended up doing about six months after the original kit was bought.  Buzz Lightyear’s arm ended up in the mouth of one of our puppies, and the arm lost that particular battle.  By that time, the Toy Story Play-doh kit was hard to find, too, and we ended up in an extensive search for a replacement before finally finding one and letting Monster Man do the honors of breaking Buzz Lightyear’s arm free.  Thankfully, he decided a month or so after that to let the Buzz Lightyear arm go, and he moved on to bigger and better things.
                During the time that Monster Man was attached to Buzz Lightyear’s arm, I often heard people refer to his attachment as an “obsession”.  At the time, I brushed it off and just counted it as being compared to any other lovey a child has, only an odd choice for a lovey.  I didn’t give the word “obsession” much thought until after Monster Man’s diagnosis of Tourette Syndrome.  In reading about Tourette Syndrome, I discovered that obsession was usually used in terms of OCD, but that there are some reported cases of obsession with objects, subjects, etc.  Perhaps, in the long run, we’ll discover that there really was more to this unusual lovey than we realized way back then.