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Saturday, June 26, 2010

Caleb…another update

I know it’s been a while since I’ve posted anything on Caleb’s diagnosis of Tourette Syndrome.  However, we’re now to the final stages of getting some answers.  Here’s what’s been going on for the past 3 months.
Caleb had a battery of tests run by our pediatrician.  He had blood drawn, an EEG, and an MRI.  Well, EVERY single test came back normal.  While we’re thrilled that nothing is wrong according to the tests, we’re still curious about his tics.  We discussed everything with our pediatrician, and he agreed that a 2nd opinion was in order. 
We had a few hiccups with our insurance company (Brian called and gave them an ear full, and they gave us some doctor choices), but we’ve now got the letter from our pediatrician stating that he does not agree with the first neurologist’s diagnosis of Tourette’s.  So, with this letter in hand, we’ll be making a trip up to Emory Children’s Center in Atlanta.  We’ll be visiting with Dr. Barbara Weissman, who is the Director of Neurology at Emory.
The only drawback…we can’t get in to see her until JANUARY 7, 2011!  That to me is a sign that she knows her stuff, and the wait will be worth it.  So, until then…we just wait. 
We have seen some improvement in Caleb’s ticcing.  The arm/leg jerks seem to have disappeared.  His facial tics have also decreased, and there haven’t been any new vocal tics.  The fact that he’s had very few (if any, really) vocal tics is what’s making us all question the TS diagnosis.  A diagnosis of TS is only given when both MOTOR and VOCAL tics are present. 
Anyway, we’re so glad that we are noticing an improvement, and we will patiently wait to visit with Dr. Weissman in January.  So, that’s all the update I have for you right now…stay tuned to see what happens in January.  smile_regular

3 comments:

Unknown said...

January!?! That's crazy! But I guess you're right, she must know her stuff. Good luck!

Lin said...

Oh, that is GREAT news!! In the meantime, just keep notes on what is happening so that you are prepared for that all important visit. It sounds very positive!!

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