Yes, we're still here.
I've been SO out of touch with just about everyone these days. I've got a boatload of reasons, but I'll spare you...
The main reason...there just hasn't been much to report. Seizures have been extremely high (& extremely intense) so my eyes stay on Austin all day (sometimes all night) everyday. In my spare time I completely shut down and focus on doing anything I can to distract myself from thinking about seizures. So, there's the condensed version.
I'm updating because I actually have something new. We had a 23-hr EMU study done at TCH last week (that's an EEG for anyone who doesn't already know). Still no hypps, but still no focus either. Still generalized...blah, blah, blah. It didn't give us much to go on in the way of treatment options.
So...after much discussion, debate, and procrastination, we've decided to go ahead with the ketogenic diet. We check in Sunday, Feb. 7 and will be there until that Wednesday or Thursday. While we're there, we'll most likely get a repeat MRI scan and lumbar puncture.
I'm sorry I haven't been better at keeping in touch with everyone. I've seriously needed a break from this though. It all just became too much to handle -and I'm still working on it.
I'll try to check back in soon...
5 comments:
You and Austin are always in my thoughts. I hope things get better, that's all I can really say.
Take care...
Good luck with the diet. Sophie was on the diet for about 6 months (from time she was 18 months old to 2 years old) so if you have any questions, just e-mail me.
I think about you all a lot. Thanks for updating.
I'm sorry to hear Austin has found no relief. I hope the diet is the answer for him. Good luck and keep us posted!
{{HUGS}}
((((((((hugs)))))))))
I recommend your Dr. Genes take a panel too. It's easier to slide those things through insurance when you're in-patient. I would recommend specifically testing for SCN1A and ARX and Rett (including A-typical). They'll look at how cute Austin is and assure you that there is no way genetics are involved...but genes are sneaky like that.
Anyway...
Ditto everyone...you guys are on my heart.
...danielle
So thankful to see a post! Was wondering (and a bit worried) about things...I know how it is, though...It's been a good while since I have written as well...
I will look forward to what happens with the diet...Will hope and pray that Austin will be one of the lucky ones that will respond well! Wouldn't that be AMAZING?
Keep us informed...We're all pulling for ya!!!
Take good care...Of yourself, too!
Cyndi
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