Tuesday, September 10, 2013

WHAT IS TOURETTE'S SYNDROME?

Tourette's Syndrome.
To be honest, before Caderyn was diagnosed or even born, I was one of the people who thought Tourette's Syndrome was funny. Yes, I was naive. Very naive.
This is what I thought of when Tourette's was mentioned *there are curse words in this video*:

http://youtu.be/fFn0llYqM8w

And you know what? I thought this was funny--especially when I watched this movie.
I don't think anyone ever imagines Tourette's could be a part of their life, so I don't regret my past immaturity, but now I definitely take a different approach to all people and their experiences in this life of mine.

Most of you already know this cutie:
This is my son Caderyn and he is four.
He was recently diagnosed with Tourette's Syndrome, or the full diagnosis is Gilles de la Tourette syndrome.
A little definition and history taken from this source, and I quote:
 
"Gilles de la Tourette syndrome (Tourette Syndrome or TS) is a neurological disorder which becomes evident in early childhood or adolescence before the age of 18 years. Tourette syndrome is defined by multiple motor and vocal tics lasting for more than one year. The first symptoms usually are involuntary movements (tics) of the face, arms, limbs or trunk. These tics are frequent, repetitive and rapid. The most common first symptom is a facial tic (eye blink, nose twitch, grimace), and is replaced or added to by other tics of the neck, trunk, and limbs.
These involuntary (outside the patient's control) tics may also be complicated, involving the entire body, such as kicking and stamping. Many persons report what are described as premonitory urges -- the urge to perform a motor activity. Other symptoms such as touching, repetitive thoughts and movements and compulsions can occur. "
 
I took a video of Caderyn when his tics were at their worst, so people could understand how this isn't really something to laugh about, or to see that he has no control over them.
Showing this video is a big step for me because the last couple times I watch this I get very weepy. I am most sensitive when it comes to my children and I struggle with knowing that they will struggle. We took this video to show our neurologist when we visit her next month in Spokane. And parents, that's the nice thing about smartphones these days. Your doctor doesn't live with you, so they don't have any clue what's really going on. If you think something is wrong with your child, try to take a video of them to show your doctor. We took videos of Gabriel to our neurologist and that helped her see some of his mannerism's that we were concerned about.
 
Since Caderyn was two, he has had tics. It just up and started one day out of nowhere. I remember my mom saying, "Did you know that Caderyn is clearing his throat a lot?"
I hadn't noticed, but then I slowed down a little and listened as my son cleared his throat every 20-30 seconds.
We took him to the doctor many times and were told it was more than likely a result of asthma he had due to contracting RSV at only five weeks old. So he got an inhaler and a nebulizer and proceeded to try a medication for asthma that was highly recommended by two doctors.
Just to be clear, I really do not like medication for my children or myself, ESPECIALLY if it can alter their moods. Caderyn was on something called Singulair and he turned into a puddle of emotions. After consulting with our main pediatrician (see, I keep making the mistake of going to other doctors), we decided to take him off the medication after only a month.

Caderyn continued to clear his throat. We would just tell people he had asthma or allergies because that is what we were told. Then, sometime last year he started adding eye rolls into the mix. He will roll his eyes up into the corner of his eyes while clearing his throat. It looks like he is having trouble focusing on something or has something in his eye. So back to the doctor he went and as it persisted, we became unsure as to whether this was truly allergies and asthma. Caderyn moved on to teeth clacking and mouth breathing where he would clear his throat, roll his eyes, then breath in loudly through his mouth before clacking his teeth.
That one just gave me the willies, and, as naive parents, we tried to get him to stop. We would tell him to stop and I even remember covering his mouth with my hand at one point and telling him to stop because he would ruin his teeth. When we would tell him to stop, he would get upset and then the movements and noises would get worse.
Finally, after another doctor's visit to our regular pediatrician where she was able to witness everything that was going on, she mentioned his tics and that Caderyn should probably go see a neurologist because she thought he may have Tourette's syndrome.
Perhaps it was because I was in a little bit of denial, or maybe it was because I was feeling overwhelmed because all of the neurology and therapy appointments we were going to for Gabriel, but I made an appointment to see an allergy and asthma specialist instead.
Don't ask me why. We never ended up going.

One day we woke up and Caderyn was doing all of his tics and had added in a neck circle where he leads with his jaw and circles all the way around with his neck. He did it all day and then came home and cried because his neck hurt.
I took him to the doctor (again!) and she basically blasted some sense into me. He needed to see a neurologist and I agreed.

We saw the neurologist in August and he was diagnosed and put on medication.
Since going on the medication, I actually think the tics got worse. It also made him a zombie, so we are weaning him off the pills and just trying to go at it from a more natural approach. We have also switched to Gabriel's neurologist because she gave us more of the "warm fuzzies" than the other doctor.

I had such a profound feeling of sadness with Caderyn's diagnosis than with Gabriel's. To be honest, I'm still struggling. Gabriel just showed so many signs of improvement so quickly and there are so many positive stories out there for children with Autism Broad Spectrum Disorder that I pretty much just pushed most of my feelings aside and barrelled full steam ahead into therapies, case workers, and organizations who could help us or provide us with more information.

With Caderyn, it has been a slow, yet gradual realization and I am usually overcome with a wave of sadness at random. I hate crying, it feels like lately all I do is cry. It just hits me all at once where I am sad, overwhelmed, and unsure of everything that is happening in our lives. I think a lot of this is just trying to understand and process how both of my children could have something wrong with them that was completely out of anyone's control. I felt so angry. I felt angry at people I knew and didn't know. I felt angry that I always try to do everything right, especially when it comes to my children, and I felt like we were being punished. I do not feel angry anymore, but I'm glad I felt that emotion. I am thankful of any emotion I feel because wouldn't it be weird if I didn't have any emotion at all about what we're experiencing? Now, the emotion I deal with the most is just the sadness and feeling of helplessness.
About three weeks ago I took Caderyn to the musical play, Shrek, when it came to town. He had wanted to go and asked about it nearly every day for a week. I scored tickets and set up a little date night where he and I could go and enjoy the experience together.
It ended up being a disaster. For some reason, Caderyn's tics went out of control during this play. He was all over with his movements and his noises and kept grabbing my hand to cover his mouth while he made loud noises. He was upset and exhausted by the end of the play and my heart was just broken. I came home and cried for about an hour after I put him to bed. My heart just hurt because he didn't even get to enjoy the night. His neck was bothering him and he was trying so hard to stop what he was doing that he was actually making it worse.
Since Caderyn was diagnosed we don't point out his tics or try to draw a lot of attention to them. I've just been trying to let him know what he's doing is okay and to not get frustrated. I leaned over a couple of times that night when he was getting upset and told him to relax and that he was just fine. To which he replied, "But people are looking at me and I can't stop. My neck hurts."

Oh that made me so sad for him! My heart just broke!

But you know, Caderyn, being such a young age right now, isn't overly affected by his Tourette's. When they are really bad, he notices them and talks about them and usually gets very frustrated with himself. That makes them worse.
My biggest fear, as his mother, is that when he gets in to school, kids will make fun of him. I was made fun of in school and it can seriously do some damage on your self-esteem. Caderyn is so sweet, seriously he is the best little person I know. He is extremely smart and athletic and just all around a  wonderful boy. I want people to see him for those qualities before they look at what his body is doing.

So here is what I have done as of late:

1. I have been doing tons of reading on Tourette's syndrome. Seriously, the Internet has so much information! It has helped me find books and articles to share with Caderyn and our family.

2. I adopted a positive reinforcement technique from a friend and our doctor has helped us apply this to correct/ diminish the more extreme tics Caderyn has.  
About three weeks ago Caderyn started doing another tic (which you can see in the above video) where he would stick his tongue out like a lizard and make a snorting or clicking noise. So I have a jar that Caderyn gets to fill with pennies and every time I notice him "locking his lips" to keep his tongue in or not doing the tic he gets to put a penny in the jar. We have drawn marks on the jar to indicate prizes (movies, ice cream, a Spiderman costume for Halloween, etc.) that Caderyn gets when the pennies reach one of the levels. This has helped to almost completely eliminate the tic--which is shocking to me. He will usually only do it now when he is tired but he notices he does it and will say, "Uh oh! I need to lock my lips."

3. We are also taking Caderyn to a behavioral counselor who will help work with Caderyn on what he is going through, help figure out what triggers the tics (stress, excitement, etc.), and possibly even help correct the tics and show him another outlet or calming technique.

4. Since taking him off the medication that made him zombie-like, I can honestly say I've noticed a huge difference. He still does the tics, but they are not as profound or noticeable as they have been in the last couple weeks.

5. We are trying to distract him when the tics start getting out of control. Putting an ice pack on his neck really seems to help for some reason. When his neck gets going and he starts to complaing about it hurting, he will lay on the couch with an ice pack beneath his neck and I think it is really just a nice break for him. I try talking with him about something like Legos, I give him a fun math problem he hasn't heard before, or I try to tell him a new joke. Anything to try and make him stop to think about something else.  

5. And we really just try to go about our daily lives. With both boys it is sometimes extremely hard to take them anywhere, so we just stay at home a lot or go for walks. Caderyn loves to be outside and I feel like he is peaceful running around the yard or riding his bike (when he isn't complaining). Caderyn is back in soccer this Fall and still absolutely loves it.

For this time in our lives, we are just working on getting Caderyn the help he needs, even if it is just someone to talk to. His health and well-being goes before anything I might personally be dealing with, and I want him to look back on this time and think more of the joy, fun, learning and growth he experienced.

This little kiddo is a Lego building machine. He loves science and declared yesterday that he wanted to be a scientist and asked if he could meet a scientist. He asks about a bazillion questions a day and is so interested in learning about everything. My son can read, I kid you not. This kid is reading books to me at night. He can do addition and subtraction--only if applied to Spiderman (Spiderman has three webs. The Green Goblin comes and destroys two of them, how many webs are left?) He loves absolutely every single superhero and knows everything about them. He is sincere and so, so loving. He is still super tall. Yesterday it took us three pairs of pants from his dresser to finally find some long enough...guess I'll be hitting the stores soon. Caderyn loves to run, About two weeks ago Jeff got home from Missoula for the weekend and as soon as he walked in the door Caderyn jumped up and said, "Daddy, lets got for a run!" And they ran for about a mile without stopping and then turned around and ran all the way back. He things his nose is bleeding when in all actuality it is only running. He hates being left out of a conversation and is constantly trying to butt in or ask what we're talking about. Caderyn loves going on trips and travels like a pro.

He is just a normal little boy with a beautiful gift. This gift will not define who he is, but will make him a stronger and more well-rounded man, shaped by his experiences, his struggles, and his triumphs. 




1 comment:

Hanz said...

Fantastic write up, Sarah. I look forward to meeting your little guys someday!