I took Grace back to the pediatrician and saw the the same doctor we saw last week, our primary is on vacation for the week. He felt that we were making a mountain out a mole hill and that Grace's case of thrush was nothing to be concerned about and we should continue treating her with ACTH. We did start her on a medication to treat the thrush.
All of this was contrary to what Dr. Kabbani has been telling us and we trust our neurologist by far more that the substitute pediatrician. Joy called the pediatricians office to speak with the substitute pediatrician to ask additional questions and address her concerns of having thrush with a weakened immune system. Everything we have been reading indicates that this is really bad. He called us back and was rather short and argumentative. Perhaps it's time we think about switching pediatricians.
We contacted Dr. Kabbani's nurse and advised her that Grace's seizures have not decreased in the past week, that she has thrush, and the issues we are having with the pediatrician's office. We wanted to know if we could decrease Grace's ACTH the next day. Granted we had an appointment the next day but we wanted to start tapering now versus later if at all possible, even if it is only one day. We are ready to have a normal baby back. Dr. Kabbani's nurse called us back and we are to back off 25% of the ACTH and we will put together a full plan the next day.
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