This is another clip of Austin grabbing his right leg and slapping his right hand before/during/after the small set of spasms. I find it extremely odd that there were right sided abnormalities found on the PET scan. If anything has ever been consistent during this rollercoaster of IS, it's that he has never strayed from the right hand issues. This has been going on since just before I saw the first spasms. It has never been his left hand and the frequency and severity of it has only intensified. Not only that, but it goes with his partiality to his left hand (he's shown a preference since he was 9-10 months old). And now? His head jerks to the right with certain types of seizures. I so wish we could get a repeat PET scan. I just wish we could do it closer to home. I guess just because he has consistent left hemisphere symptoms, it doesn't mean it's not bilateral. Not that I'm wanting to revisit the surgical world...but, I just wish I knew why his behaviors and symptoms don't seem to support the findings.
3 comments:
What about a MEG scan instead? I know Chugani leans very heavily on the PET scan. But the MEG scan is becoming increasingly exciting...because it can reveal real time electrical activity like the GRIDS do. Follow your heart on this. I know how hard it is to keep pushing and fighting and coming up empty. Even though Chugani told us yes...we were told no by several neuros first. I know how much energy (that we don't have) it takes to keep pursuing. Especially when the answer is murky. But I think you should push for this...
((((((hugs))))))
...danielle
I agree with Danielle...follow your heart. Because there is NEVER a right or wrong path to take in this crazy IS world. We were all over the spectrum with Sophie...pushed meds to no meds to alternative treatments. There are so many paths to take that you have to trust what feels right.
Seizures take on so many "personalities", don't they? So many folks have seen some of Colby's "behaviors" and thought they were seizure activity when they were simply just his self-stim thingies...And vice versa!
You will do the right thing...As the girls have said above...I wish I could be of some help...
I DO know one thing...Isn't it SO hard to sit and capture the seizures on camera and NOT be able to just take him in your arms to comfort him? I HATE that....I'm sorry....Breaks my heart...
Austin has the sweetest, sweetest smile.....
Cyndi
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