*****Please note that there are days where I will post more than once. So, to find out all the latest happenings and "goings-on" in our family (or my random thoughts), be sure to scroll down.*****

Friday, April 2, 2010

Update on Caleb

As most of you know, we had Caleb’s appointment with the pediatric neurologist on Tuesday of this week.  It didn’t go at all like we had planned.  The doctor came in and asked why we were there.  So, I explained what we’d been observing since Caleb was 4.  I mentioned how there are days when it’s very obvious to others, and he asked me how I felt about that guess he was trying to play psychologist, too.  I told him that it just made me realize that we need to be advocates for Caleb.  I then mentioned that I don’t think any of Caleb’s friends have noticed.  Caleb then chimed in that some of them have noticed and said something.  The doctor then asked him how that made him feel.  Caleb said that he just told the boy that he can’t stop it.  The doctor told Caleb that is exactly how he should handle it…just explain it’s a tic and it’s not something he can control.  He also asked if it was interfering with his schooling or anything.  I explained that we homeschool, so if Caleb has a tic, then it’s not an issue.
He then spent some time checking Caleb’s reflexes and measuring the size of his head.  After that, he said that based on what we had told him, he could give us a clinical diagnosis of Tourette Syndrome.  He explained that it will wax and wane (basically come and go, have good and bad days), and it can be categorized into mild, moderate, and severe.  I’m guessing Caleb’s is moderate because that’s what the doctor mentioned.  He mentioned that there are medicines, but there’s no need for them at this time because it’s not affecting his schoolwork or any other areas of his life.  He also explained that sometimes it gets better, and sometimes it worsens.  The doctor also said that there’s really no need for another visit unless the situation changes, and we feel that there needs to be some further discussion.
Brian and I asked him about changing Caleb’s diet and adding vitamins/supplements.  The doctor just kept saying that there were no confirmed studies.  I’m sorry, but that just rubs me the wrong way.  If there are parents of TS children out there who have used diets, vitamins, and supplements with their children and have noticed improvement…that’s enough reason for me to give it a try. 
So, we left the appointment knowing as much as when we went in.  I knew from reading on the Internet that it was probably Tourette Syndrome because of the motor and vocal tics being present for longer than a year.  However, what I wasn’t expecting was a doctor that was not very sympathetic or helpful.  Brian and I both feel that it was a big waste of time.  We didn’t get any new information, and we didn’t get any help.  The doctor didn’t suggest any testing or further observation.  So, our son now has a clinical diagnosis of Tourette Syndrome on his medical record all based on what I told the doctor.  That just doesn’t sit well with us. 
Right now, we’re not sure if we will seek a second opinion or not.  There is another pediatric neurologist in our area, but that visit this week has left a bad taste in our mouth.  Part of us wants to get a 2nd opinion because this is going on Caleb’s record.  However, part of us doesn’t want to fool with it either.  We don’t want to put Caleb through any unnecessary pain or hurt.
We’ve explained the whole situation to Caleb.  He knows that his movements are called tics.  He knows that he cannot control them, and he knows that he shouldn’t let it bother him.  We’ve also explained to him that if someone asks him about it, he can simply say that it’s what his body does and there’s nothing he can do to stop it. 
I’ve started reading the book I bought (Natural Treatments for Tics & Tourette’s), so I’m hoping that will give us some answers.  At this point, Brian and I are convinced that we have to do what is best for Caleb.  If the doctors will not recommend diet and nutritional changes, then we will do our own research and reading.  We will determine what is best for our child.  We’re not going to sit back and do nothing.  We will do everything we can to help Caleb in this situation.  If I could take the tics myself, I would. 
We’re thinking about enrolling him in gymnastics to give him something to focus on.  He’s been to two classes, but they were not the right one.  LOL!  So, he’ll try the beginner’s class next Tuesday, and hopefully he’ll enjoy it still.  We’re looking into other activities as well that will maybe help with the situation. 
Please continue to keep us in your prayers.  I told Brian yesterday that I almost started crying while Caleb was in gymnastics.  He came to me to get a sip of water, and while he was walking back to his teacher, he kept having tics (the arm jerk).  It’s like he has to stop walking in order to have the tic, and then proceed.  It broke my heart to see that happening to our sweet child. 
I’m sure we will all have our ups and downs with this situation, but I know that God doesn’t give us any more than we can handle.  HE designed Caleb, and HE has chosen to bless him with Tourette Syndrome.  So, we will accept it and move forward.  We will use this for God’s glory, and hopefully Caleb will touch many lives. 
Thanks again for listening and reading.  We truly appreciate all of the prayers, support, and encouragement!
***I have so many more of this week’s events to post about; however, I do not want to take away from this post.  So, stay tuned for some crazier posts later on.***
Happy Easter to all of you!  Christ is RISEN!

5 comments:

Mighty M said...

Thinking about you!

Doctors are often always in such a hurry, might be nice to try to find one who is on your side!!

Have a great weekend!!

Semi-Slacker Mom said...

I'm such a slacker follower, I had no idea y'all were going through this & your mom usually keeps me updated with anything I miss. I will pray for you, but I also think you should seek out a second opinion. xoxo

Lin said...

Oh, I'd be trying a ton of doctors until I found one that I could work with. Don't give up because one doctor was lame--keep searching! It won't drain Caleb if he knows that you are finding a good doctor for him--in fact he'll see that you are taking this serious and see that there is help out there.

As in any field, there are good and bad doctors. You need to keep going to find one that fits just right.

Hugs, pally.

patrick said...

I'd definitely get a second (or third) opinion, and consider look outside of Peach County to find it. Eggleston/Scottish Rite in Atlanta has a bunch of world-class pediatric specialists, and it might be worth it to find a practice whose focus is pediatric TS to confirm/deny the first opinion.

Hope said...

Hi! I read your post on the ACN Tics/Tourette's forum. I followed your link to your blog here. My son has had tics for about 3 years. We haven't been to a neurologist yet for the exact reasons you were dissatisfied. Everyone I have talked to says they pretty much got the same info you did with your son. The head of the TSA here told me the only reason to get an official diagnosis is to have it documented in case our son needs academic support later on. He is top of his class right now but you never know... We are eliminating gluten and casein and a few other things as a result of the ALCAT blood testing screen. We are seeing a Naturopath and hoping for the best and trusting in God! I will add your family to my prayer list! I know how hard it is to see your little one have to deal with tics. It breaks my heart but I know we will all be stronger as a result. God Bless!

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