Well, it looks like Dr. Ben-Ezer was true to her word and spoke with Dr. Shields yesterday afternoon. The nurse at UCLA called last night to inform me that Dr. Shields would like us up there on April 18 to admit Jenelle for the Ketogenic Diet! Even though Dr. Shields told me at the conference we needed to "talk", I think he would prefer to have Jenelle admitted so we can start everything right away, including any other tests he may want in light of her new metabolic issues.
UCLA warned me that they expect Jenelle to have a difficult time at first with the diet, but that it was not impossible to get her on it. Jenelle will start the diet a little differently than most patients in that they don't think they can "fast" her to get her into ketosis. What this means is that we may be there longer than usual. UCLA also warned me that she could get "very sick, very fast" and that they wanted to take some extra precautions while she is admitted like daily blood work and keeping an IV open. Remember, Jenelle already has low bi-carbs, and usually when a patient goes on the diet, their bi-carbs get even lower, so we could see some problems. Although I know of kids who had difficulties with the diet and metabolic acidosis, I think it is worth a try, especially since it may bring to light some answers to other questions about Jenelle. Also, it will be easier with insurance to just admit her so we can work with Dr. Shields, rather than wait for an authorization for a consultation, and then admit her! One funny thing - Dr. Shields said, "knowing Jenelle and her usual "opposite" reaction to things, we'll probably have an easier time with this than we think!" - even he knows she is unusual!
Please keep us in your thoughts and prayers next week as we get ready - especially that Jenelle can remain healthy so we are not delayed again! Fortunately, Jenelle has her GI tests scheduled for next Friday, so we won't have to worry about using Keto food instead! As always, I'll keep you posted!
Friday, April 08, 2005
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