Preliminary results from genetics test: Noah doesn't have the most common type of CPT1 deficiency but we are to be cautious about large deletions (I'm GUESSING chromosome deletions, but I'm not sure about this one). Dr L is asking Metabolism for guidance.
What does this mean?
We still aren't cleared for keto diet.
Don't know if there is a metabolic disorder.
Haven't been able to schedule surgery to "fix" reflux because we've decided that "No diet, No surgery".
Keto diet starts Nov 11th (man, is that coming up quickly!?).
We've been in contact with Dr Rockstar and his extremely helpful and nice Nurse S. We've sent them insurance info, history, etc.
What does this mean?
We are waiting for approval for a PET Scan from our insurance (please pray we get approved!).
As soon as we are approved we will go next week and visit with Dr Rockstar, have a 24 hour video EEG, and a PET Scan.
They review test results and determine if Noah is a surgical candidate (please pray he is!).
We've had a really rough couple of days. Seizures have been fast and furious and very distressing for poor Noah. It's torture to watch; I can't even imagine what it's like to endure. We are just really hoping we can help him and get him some relief.
Other front tooth is rearing it's little head too! Teeth=seizures for us. Argh!
Hang in there little Noah. I am praying everything goes your way and bring on the diet and surgery! Love you so much. Seizures suck.
ReplyDeleteOMG I love the new pics!! He is such a Harris baby (the cheeks) Thinking of you always and praying for the best. Can't wait to see his costume of the "sucky" Haha quarterback!Go Broncos(their socks are hideous) Miss you guys bunches! Good Luck with all the tests. Just a few more weeks and Mom and Dad will be heading that way--love to you all!!!Stacy
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