I feel that we have gone through the entire alphabet multiple times with all of the "plans" that we have had this year. Here is the most recent (but it could change) version of what we are going to do!
Johns Hopkins has denied taking us on as a patient unless A. our insurance pays for it or B. we move to the Trans-Atlantic Area. Our current insurance has denied our neuro's request to send us to Baltimore. We could appeal, but it will take months and we don't really think they will give in as they have already previously approved Primary. We asked Hopkins if they would take us once we moved-if we started the diet here. They usually have a strict, "you can't start somewhere and then come here and start again" (kind of like, we don't clean up other hospitals messes) policy. However, they said that once we move, as long as we give them at least a month's notice, they will take us on. This was great news. We still feel that Cole needs to be there eventually and recieve services from their Epilepsy Center.
Cole's pediatrician and neurologist have convinced us with their concern that we just can't wait any longer. We have to take action because Cole is having way too many seizures. If he continues to develop new types at the speed he has been these last few months, who knows where he'll be at neuro-wise by the time we can get a job, finish school, move, etc. By the way-he had a 15 min partial yesterday. Day 12. At least that is a day and a half more than he has gone in the last three months, the longest he has gone without a partial is 10 days.
SO-one week from today we will be checking in to Primary to officially start the diet. I am confused, frustrated and more than a little scared. I know that when Brian and I felt that we shouldn't start in April, it was for a reason. Things change on a daily basis for us and so...this is the right thing to do, right now. We'll still go to Hopkins as soon as we can. Until then, I guess we just have to mentally prepare ourselves again for the big change that is coming.
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I hope, hope, hope this works for Cole!!
ReplyDeleteAre you nervous about the diet itself or the ramifications if it does not work? I can't believe how restrictive and time consuming the Keto diet is. With Katie's eating habits it wouldn't even be an option.
I was so happy to see that the glasses you got him helped with going outside.
You go, Hyer family! We're cheering for you all.
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