So we have found that Johns Hopkins is not taking us (as of today; it could change).
They said it is because they can not ethically provide a service that we could get for free in our home state. Did they even listen to the part about our insurance NOT paying for this? Oh, I am so frustrated. We are still going forward with the hope that we can convince our neurologist to write a letter to the insurance. We do not meet with him for a couple of weeks, so until then we are asking for a miracle! We were supposed to start today at Primary.
Cole deserves a chance. He is a prisoner in his own home. He is lonely, frustrated and bored (and it goes the same for me)! We have been trying to get all of the medical records together for Hopkins, but we got an e-mail today that told us to not waste our time sending them until we could get our insurance on board. Anyone know some sort of interesting insurance spell that can make people see our way? I would be willing to dabble in VooDoo :)
Until then, I have to get some heavy hitters on our side to convince our insurance that it is worth their money to pay for the ketogenic diet. Sounds appealing, eh?
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OH NO! I can't believe that about Hopkins! At least it's good you found out about the insurance *before* you went through the initiation at PCMC. Your neuro has to have a ton of pull given his position at PCMC! I bet a letter from him would count extra to the insurance people, I hope. Gosh, bureaucracy sucks! Can't wait to give you a much deserved hug on the 8th! :)
ReplyDeleteI honestly think you need to lock all the people "in charge" of the insurance up with a kid that can't go outside, play with friends or go to church because it causes a seizure. Then have them stay up all night for several nights waiting and wondering when he is sick. Calling 911 or rushing to the hospital every month or two. Not to mention the dozens of seizures they would have to deal with daily!!! Add on all the meds and doctors visits and I think you might get someone convinced.
ReplyDeleteDo I sound like a crazy, frustrated grandma??
Aaargh! Insurance companies are so unendingly frustrating. The Friday before our son was supposed to start the diet, at 5pm we got a call from the hospital saying the insurance had denied his inpatient stay so they would not admit us. We wrote a convincing email to the doctors telling them why they should admit John anyway, which they did. Later we appealed the decision with the insurance company and won, but only after months of haggling. Goodness, I am so sorry. Please, please let me know how I can help.
ReplyDeleteI'm curious that Johns Hopkins would say that. They take people from all over the country all the time, don't they?
I'm sure Primary Children's will accommodate you if you decide to just start there and let you get on it quickly. The time will not be wasted, as you will have had more time to let Cole adjust to the food.
By the way, I've still got some KetoCal you can have if you want to try baking with it. I can bring it to your house when I'm in Utah in May (11th-15th) or if you are ever up north you can stop by my parents' house in Farmington. Just let me know.
Love and prayers,
Ashley