Sunday, December 14, 2008

The boy who wouldn't stop popping

I mentioned a few weeks (months?) ago that at one point in our past, Kellen was almost diagnosed with Tourette's Syndrome. I'm not sure I mentioned it at the time it was happening ..... I've slept since then and am not sure of a lot of things. Like why I thought those Sally-Jesse-Raphael red-rimmed glasses I wore in the 80's were attractive ..... but I digress.

I got several private e-mails asking about this, and so I thought I would share the story with all of you now in the hopes it might help someone else who could possibly be going through the same thing with their child. Not because I'm a doctor (I don't even play one on TV!) or because I have anything profound to say, but because at the end of the day, if you're facing a problem or worry or concern, it's nice to know you have company.

Kellen's "issues" began near the end of second grade, although I would be hard pressed to say exactly when. It was simply like one day we looked up and realized he had developed a series of tics .... Blaine and I looked at one another, scratched our heads, and asked ourselves, "Just how long has he been doing that, and why haven't we noticed???"

He had been a hair-twirler since birth (still does it -- he's ten -- I KNOW) so I think we just weren't paying much attention when he picked up what we assumed were a few more habits. But these were a little more distracting ...... opening his mouth quickly, as if trying to pop his jaw, jutting his jaw forward, and wiping his mouth. The interesting thing about the way he wiped his mouth was that he did it EXACTLY LIKE my dad used to do it. Take your two fingers and put them in a "V" for victory. Then turn them toward your face, and use those two fingers to wipe each side of your mouth. Kellen has the exact same hands as my dad did, the same fingers and fingernails, and honestly, it was uncanny to watch him perform the exact same behavior as my father .... except Kellen did it about ten bazillion times more each day.

As summer progressed, we noticed these behaviors more and more. Whether he was actually *doing* them more, or we were simply more observant, I'm not sure. But it was bad enough that when my mom came to visit at the end of that summer, she noticed and mentioned it to us. It was also much worse when he was under pressure of any kind, like on the soccer field. When school started, I asked his teacher if it was distracting to the other kids. She said no, no-one had complained, but that she had noticed it as well.

Naturally, I did what any self-respecting parent would do --- diagnosed him myself via the Internet. Because hello, who even needs medical school when Dr. Google is right there with all the information one could possibly need???

Of course my research of "tics" led to "Tourettes" which led to the certainty that even though the percentage is miniscually small, without a doubt Kellen would be in the teeny tiny fraction of the Tourettes population with uncontrollable vocal outbursts and violent jerking behavior which would eventually lead to alternative school and extreme sedative pharmacology. {No, I don't know why Brayden does well in drama, do you??}

I took him to see his pediatrician, who sent us to a neurologist. He explained to us that the tics were involuntary and could not be purposefully stopped for any length of time. He said it was like a sneeze ... maybe you could keep it from happening briefly, but if it's going to happen, it's going to happen, and sometimes trying to fight it can make it worse.

He said the first thing we needed to do was rule out any sort of head trauma, seizure activity, and/or epilepsy. Then, assuming those factors were negative, he assured me that a great number of children actually go through a "tic-ing" phase in their lives, and most outgrow it without any interference. Only after the tics have been in duration for one year, without stopping or if perhaps they are getting worse, would it be classified as "Tourettes". If at any point they became disruptive, there were medications that we could try, but that he recommended doing nothing (besides ignoring them, that is) unless it was disrupting Kellen's daily life.

To that end he scheduled Kellen for a sleep-deprivation study. What that means is we had to keep Kellen up all night, then take him to the sleep lab at the hospital the next morning. Let me just tell you that although most young kids *think* they want to stay up all night, in reality, it is very difficult to keep an 8-yr old awake for that long.

Once we arrived at the hospital and got checked in, they took him to a sleep-room and put all kinds of electrodes on his head to measure his brain activity, let him lie down and go to sleep, then proceeded to flash all kinds of blinding strobe lights in his face while he slept. (Hey! Just like a TSO concert!!)

I sat in a chair next to the bed and watched him sleep during the test, and thought about what it might mean to have a child with Tourettes. By this point I had researched more, and knew it wasn't the end of the world ... that in fact, many kids sniff, blink, clear their throat, and cough their way through adolescence. But truthfully, I didn't want to have to deal with any of it. I had just gotten one kid through cancer treatment, and I had a real good pity party for myself right there in my chair, thinking about how this might make life difficult for Kellen.

That afternoon, I went to the gym to walk on the treadmill. (I know, it was during one of my brief, crazy 'exercise' stages .....) Now remember, *I* had been up all night as well. Above the treadmills were televisions, and they were all set to CNN .... to the rapidly breaking news story about Charles Roberts and the Amish schoolhouse murders. I had gotten so upset watching the news story (and on a treadmill, with the screens right in front of your face, you are a pretty captive audience) that I left the gym. On the way home, my girlfriend Kim called to ask what I was doing. I told her I had been up all night, taken Kellen for a sleep study because the doctors thought he might have epilepsy .... and promptly burst into tears. (See? See what no sleep does to me??)

Poor Kim, bless her heart, she had no idea any of that was going on. Then I blubbered for a while about those defenseless kids in that school and really, sort of had a mini-nervous breakdown right there in my car. Luckily, Kim stuck with me until the end of the story, and was able to tell me about some friends of hers whose daughter had been diagnosed with tics, who outgrew them after a year or so. Just hearing that .... just knowing that yes, some kids really do outgrow them without any problems, was exactly what I needed to hear. (So Kim, I don't know if I ever thanked you for pulling me away from the edge that day, but I really appreciated your level head amidst my personal crisis!)

Luckily, all of Kellen's tests came back negative. So the doctor said we wait, and we watch. And although I'm embarrassed to admit it, there were a few times during the next few months when I would look over at him, jerking and popping and opening and closing his mouth, and snap, "Can't you just STOP IT?!?!?" (not a proud moment, I know.) But for the most part, we ignored it.

It went on for a little over a year, total. But it never got markedly worse (again, except for when he played soccer ....) and after a while, the frequency slowed down. Then slowed some more. Until all of a sudden one day I looked up and realized ... "hey I can't remember the last time I saw Kellen doing any of his tics." And I asked Blaine, and he said he couldn't remember either. And then my mom came for another visit and said she didn't notice near as much either.

And then one day they were just gone. (Except for the hair-twirling .... STILL DOES IT!) We never used any kind of medication or therapy .... just waited it out, hoping it would go away on its own, like they assured us it most likely would ... and it did. End of story.

So while I speak with no authority whatsoever, I share our story in the hopes it might encourage someone else .... someone who simply hasn't reached the end of it yet. Because chances are good it will go away. And if it doesn't, it only took me one sleep deprived night to remember there are certainly much worse things in the world than a little throat-clearing and jaw popping. And if it's worse than that, well, thank goodness there are doctors in the world who know more about it than me and are willing to help.

19 comments:

Natalie said...

I hate to tell you but I'm 30 years old and still twirl my hair...I've done it since I was an infant. LOL

Anonymous said...

Kristie,
Hi - lurker from Minnesota here. Anyway, I love your blog and stop by from time to time... you always have an insightful way of sharing something and putting a smile on my face. Just wanted to say that you did a very, very nice job of explaining the difference between a common bout of childhood tics and Tourette Syndrome. My 10 year old daughter has Tourette Syndrome (diagnosed at 5). It's bad. So bad that she does take a cocktail of meds each day that help alleviate her ADHD, anxiety and tics. The meds are helpful for us all, however, what makes the world of difference is the understanding and support of friends, family and school staff. My daughter is mainstreamed 100% of her school day, with the help of a full-time paraprofessional. I think that by allowing her the option, EVERYONE learns and benefits from the experience. Did you see the Hallmark Hall of Fame movie "Front of the Class" last weekend? It was about a boy that grew up with Tourette Syndrome in a not so supportive environment. He went on to become a teacher in Cobb County, Georgia. Very inspirational! Thanks for sharing your insight and experience with Kellen's tics...you did a nice job!

Lauren said...

Wow, Kristie, your post just reminded me of over a year ago when Fergus developed a tic. We did eventually check in with his pediatrician, and he was very reassuring. The strange part is that although I remember there was a tic, I could not immediately recall what the tic was! I just asked Rob, and together we finally remembered it was a little grunting throat-clear thing. For a long time it was very present in our lives, and worrisome, and now we can barely remember it. Ah, the protectiveness of memory.

Lauren

Jan Ross said...

Don't feel bad about yelling at him - we went through the same thing with our son when he was into an eye-blinking, face-scrunching tic series. After doctor visits and eye checks, we were told to wait it out - but it was so ANNOYING! He finally grew out of it.

gorillabuns said...

I do have to say, my oldest displays VERY annoying ticks and sounds at times. I try to ignore but like you, scream "stop! just please stop sniffing in 4 sniff intervals!" She usually gets over them on her own. I do wonder if down the road she might need anti-anxiety meds. I know I sure do.

cakeburnette said...

LOL...I thought the title of this post was "The boy who wouldn't stop POOPING"...guess I need to look into some reading glasses, maybe? ;)

Jacqueline said...

I'm so happy that everything turned out good for Kellen and your family. You really do have a way with words, Kristie.

FLMOM said...

Kristie-

I have been lurking on your blog for years. We were in a Survivor chat group together years ago. Anyway-I love your blog. I read it daily and keep your family in my prayers. As my Christmas gift to you, I decided to finally sign in and comment.

My son also had tics starting in about 2nd grade that used to drive us crazy. His ranged from clearing his throat, to eye blinking, jutting his chin forward to repeating some pretty annoying words over and over....meow..turtle...etc. I took him to the pediatrician who recommended we switch his ADHD meds. That did the trick although I still notice a slight tic when he is under a lot of pressure. Recently it has been shoulder shrugging. I think that the less of a big deal we make over it, the quicker it goes away. Another thing we noticed on our own was that when he played a lot of computer or video games, the tics increased significantly. Dr. Mom(ME) thinks it must have something to do with the strobing lights that also affect epileptics.
Thanks so much for your blog! It has brightened many days for me. I moved to FL as my first nonmilitary move right when you moved to OK. It was nice to read someone else was going through the same things I was.

Anonymous said...

I taped the Hallmark movie on Monday and am watching it today. I don't know if you saw it, but I wanted to kiss the middle school principal and hug that boy.

Twirling hair seems so insignificant by comparison.

Dixie

Melissa said...

My brother used to have this horrendous tic when he was about Kellen's age or younger. He would suddenly blink his eyes real hard, then extend his tongue all the way out as far as it would go. He looked like a reptile of some kind having a seizure. It was annoying--blink, tongue--blink,tongue--but it finally stopped after a while and hasn't reappeared since, and he's 40 now.

Stephanie D. said...

Interestingly enough, kids with ADD & ADHD also have interesting "tics" and repetitive behaviors. My son has ADD and definitely had a few of those problems, but like Kellen has outgrown them all (thank the good Lord). :)

Anonymous said...

I quickly looked at the title of your latest entry and my eyes saw "The Boy Who Couldn't Stop Pooping". I read through the entire entry waiting for the "poop" part before I realized I most certainly misread the title and, lo and behold, I was reading about "popping" not "pooping" (thank goodness!!!). Guess it's time to stop fighting and break out the reading glasses. Glad to hear that the story had a happy ending.

mom25in5 said...

Hey Kristie;

Thanks for sharing your story. And you're right, those of us in the middle need a happy ending. We're still here...with my son "ticing" (even though the neurologist made me feel like I was somehow mentally deficient for calling them that...). He's progressed, changed his tics, still doing some of the same things...and all the while his Dad & I wonder whether we should go back to the neurologist to suffer yet another bought of "your idiots" from him. Sigh.

My son doesn't complain, his sibs don't either. His friends just call it "Scott". I guess until it's a bigger deal in his life we'll just live with it.

Thanks again for sharing...it has "pulled me back".

Hugs,

Kim

Rain-Ice-Snow=Winter in Missouri Mom to:

Daniel-13
Scott-12
Bryan-10 (hair twirler mine & his!)
Sarah-8
Dana-8

Anonymous said...

Ok, m son, while not tic-ing, does the most weird things...he rubs his fingers (thumbs especially) SO MUCH that the skin gets hard and calloused (I know my spelling is awful!) and rough. I try to get him to leave them alone to let them soften back up. He will...for awhile...and then it's back to rubbing them. Rubbing them (the back of his fingers) while sitting in the van driving...sitting watching tv...sitting in church. Just rub, rub, rubbing. Now if THAT doesn't make you think you've damaged your son for LIFE by causing him to be so NERVOUS AND UPTIGHT that he does that all the time, I don't know what would!
Patricia, GA

Jenny Braden said...

OK, I lurk all the time and keep up with all of you regularly, but I had to come out of hiding to laugh and say I also thought the title said "pooping". I had to chuckle when I saw that two other people did the same thing. Wonder what that says about us? LOL

Jenny Braden

Mom on the Run said...

That's interesting. My daughter has a "licking her lips thing" going on right now. Keep telling her to apply chapstick. I think she is nervous about school? I don't really know. I will keep an eye on it. Thanks for sharing your story.

Alisa said...

Thanks for sharing and I know it's not a subject to be made fun of, but I'm fairly sure you'll appreciate that I read the title as "The boy who wouldn't stop POOPing"
Sorry Kellan, no hard feelings ok?

Kelly said...

I used to clear my throat non-stop as a child and it drove my mom crazy. I had to do the sleep study too (but that was because of some unrelated seizures I was having). Not fun!! I just wanted to share because I'm now a seizure and "tic" free adult!! Although sometimes I'd like to blame tourettes for my swearing. LOL

Anonymous said...

I totally remember that day. Not sure that I am ever good at saying the right things, but glad that I was there to pull you back! As for the twiddling...that is as cute now as when he was a baby. Not to mention a family trait. I will forever have the picture of the 3 of them with their sippys sitting in front of the tv - sippin'and twiddlin'. So cute! I for one hope that never stops!
xo Kim