We had a productive visit to Boston Children's yesterday. We met with nurses, our neurologist and our Keto dietitian for about two hours. At this point they are running blood and urine tests to determine weather or not Izabelle is a good candidate for the Keto diet. We will know within two weeks if she is or not. If Izabelle is a Keto candidate we will then be contacted by a scheduler to schedule Izabelle's inpatient stay at Boston Children's. This is a Tuesday-Saturday or Sunday admission. They said that we may get in within 4-6 weeks as they have some open spots.
As for Izabelle's current condition. Izabelle is still seizing about 11 times a day at this point even with a med increase last Tuesday. I have called the neurologist in Portland again to work on more med changes. Izabelle and I had a big scare yesterday morning while she was eating oatmeal for breakfast. She had a panic attack when she came back to consciousness after a seizure while eating. She may have gaged or choked… She was fine but I am left very nervous. I am getting CPR/First Aide trained ASAP and I am encouraging her father to do the same.
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