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Monday, March 15, 2010

Waiting for Answers…

I’ve gone back and forth about posting this.  However, I’m hoping that by putting it out there that some of you with experience with this may shed some light for us.  So, here goes…
When our sweet Caleb was in preschool, his teacher in the 4-year-old class mentioned that he was excessively blinking his eyes.  Well, we noticed it, too, so I made an appointment with the pediatrician at least I think that’s why I made it…it’s been 2+years, so who really knows why I made it.  The pediatrician just dismissed it as allergies and told us to keep an eye on him.  So, that’s what we did, and I think it went away for a bit.
Now, fast forward to the last Friday in February of this year.  Caleb and I had gone shopping with my mom to get supplies for the co-op classes that I was teaching.  When we got home, I noticed that he was grimacing his face and also had a little tongue/mouth issue.  It was almost like he was sticking out his tongue, but in a “limp” way.  I pointed this out to Brian, and he noticed it as well.  Being the worried Internet savvy mom that I am, I started looking for answers in the most dangerous place on the Internet.  Everything that I read pointed to Tourette Syndrome.
Brian and I kept an eye on Caleb, and we decided that maybe a visit to the pediatrician was in order.  I called and made an appointment for Monday, the 1st of March.  We  made arrangements for my mom to watch Micah because we didn’t want to have to deal with him at the doctor.  Over the course of the weekend, Caleb’s tics got quite noticeable.  His tongue/mouth issues actually turned into a smacking sound, and he was quite loud with it.  We asked him if he knew what he was doing.  He responded that he did, but he was unable to stop it.  Again, this all continued to worry us.
We went to the pediatrician on the 1st, and I had to write a note explaining while we were there.  Caleb is terrified of shots and “finger pricks”, so he freaked out when I mentioned the doctor’s visit.  Brian assured him that it was just a visit to discuss healthy eating with the doctor.  While we were in the office, the doctor noticed the tics/twitching as well.  We decided to send Caleb back into the waiting room so we could discuss the issue without him hearing us.  Our pediatrician mentioned that he did notice the tics; however, he probably wouldn’t have if we hadn’t brought it to his attention.  He mentioned that it could just be transient motor tics.  (As a mom and someone who has done a little bit of research, I think it’s more due to the fact that it’s been going on for 2+ years).  He then told us that there are medicines they use to treat it; however, they are either anti-seizure or high blood pressure meds.  I had already read this on the Internet, and we informed him that we would rather NOT do medicine as long as it is not interfering with Caleb’s academics and well-being (right now it is not).
Our pediatrician decided that it would be best if we went and saw a pediatric neurologist.  The neurologist would be better able to see what’s going on and discuss our options with us.  So, that’s where we are right now.  We have an appointment with the pediatric neurologist on the 30th of March.  I’m sure it will be the first of many appointments until we fully understand what is going on.  We are aware that a lot of other issues can accompany Tourette Syndrome such as ADHD and OCD.  Caleb hasn’t been tested for any issues, but I’m sure there will be an array of testing done.
The tics are still present, but it amazes us how quickly they can change.  There are days when we hardly notice it, and then there are days where it is very obvious.  He’s had various motor tics (eye twitching/blinking, head turning, facial grimacing, mouth/tongue issues, etc) and vocal tics (throat clearing, sniffing, etc).  After we sat and figured everything out, all of the things we had seen in Caleb started making sense.  We’ve been noticing these tics/twitching incidences for 2+ years now, but we JUST put all of it together.  I think the reason we didn’t think more was because they would disappear for a short while, and then come back in a new fashion. 
While we are thankful this is not a life-threatening or debilitating illness, we do know that it can be a social issue.  We are now even more convinced that our decision to homeschool was the right choice for Caleb, and we made that decision before we ever had children.  It’s amazing how God lays everything out for us according to His perfect will.  We ask that you all keep us in your thoughts and prayers while we go through this process.  I will update more on this situation once we have our appointment on the 30th. 
Also, I’d love to hear from any of you who have experience with Tourette Syndrome.  Thanks for reading!


Melissa, Multi-Tasking Mama said...

My oldest son has TS (he is now 16 almost 17) He didn't start on meds until he was an adolescent because the tics were embarrassing in middle school. He is on Clonidine, which is a blood pressure medicine and it does help decrease the tics. His tics are worse when he is stressed, sick or if given an antihistamine medication like cold medicine.

There is a lot of info and support out there for kids with TS.

SuzyQ said...

I did notice it the first Thursday of Coop but that was the first time I had ever seen him do it. For a couple of years Griffin's shoulders would twitch up and down when he got nervous, talked to people or was excited. Nothing to serious though. I will definitely keep him in my prayers.

Mighty M said...

Thanks for sharing with us - hopefully you will get some insights from other readers! Thinking of you and keep us posted!!

April W Gardner said...

So sorry you're going through this. To see your child have health issues is very difficult. Praying the Lord heals Caleb.

Anonymous said...

I hope the doctor can give you all the information you need. I'm sorry you're having to go through this.

Lin said...

Oh, Sherrie, I'm sorry that you are worried and that you are going through this. I know this sounds trite, but be patient and don't worry until the time comes to worry. I think medicine has advanced so much now, and there is a lot of help for kids with all kinds of problems. I'm holding out that you will find help for you and Caleb and that all will be fine.

Hugs, pally. There is nothing worse than worrying about your child. I'll send prayers for a positive answer for you all.

Pinkie said...

I don't have any experience with this but I just wanted to say good luck to you all at your next visit.

Jennifer said...

I just happened upon your blog today and your story is touching. I will pray for you and your family, and that you get answers quickly. I am also glad you decided to share this with others. It may help someone out there going through the same! Bless you for your courage. I liked what I read from this entry and others and I will be following your blog, from now on. God Bless you, your family and little Caleb!

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