Update # 24

Here's what's been happening since last Wednesday's update. Zane hasn't had a grand mal seizure since last Tuesday morning. But in the days since then he has been having myoclonic seizures and they look different than before. In some ways they are worse and in some ways they are better. He seems to be getting them in clusters, for example he might have a muscle jerk where his arms will raise up and his face might make some twitching movement and then his hands tremble a little and it is on and off for about 8-10 seconds. Sometimes he can talk to us during the episode. It almost looks as if a grand mal wants to start but doesn't. Once he had a myoclonic while standing and did not fall down. He had as many as 6 of those cluster episodes yesterday. Abe and I decided to put him back on the Chlorazapate (temporary protection) yesterday to see if it helps with the frequency of the seizures while the Keppra continues to build up in his system.

I spoke to Dr. Crisp this morning and he said we could continue the Chlorazapate for another 48 hours then we'll stop it. He has us coming in to speak with Amy, the dietician, on Wednesday to get some general information about the diet. He said her schedule looks good for starting the diet either the week of the 20th or the 27th if the medicines don't work and we move ahead to the diet.

I received 2 books on Friday regarding the diet, Keto Kid and The Ketogenic Diet. I've finished Keto Kid and have started the second one. Keto Kid was definitely worth the money. I can tell already that it will be invaluable if we do the diet. It is full of recipes and a lot of them resemble kid foods. It was written by a mother whose son was on the diet for about 2 years and was successful in stopping his seizures. I've also spoken at length with the mother of the boy who had success with the diet and is now seizure and medication free. He is one of Dr. Crisp's patients. Her son's story sounds a lot like Zane's. She gave me tons of info and has offered up her email address and cell phone number so that I can reach her at any time with questions I have. Thanks, J.B.!!! Words can't express how much I appreciate her willingness to help us, as well as others who have experience with the diet who have offered up their assistance. We are touched by everyone's unconditional generosity and in most cases it is from complete strangers.

We were informed today that at this point Tricare (our insurance) is not willing to pay for outpatient visits with the dietician. A member of Dr. Crisp's staff called Darnall Army Hospital and found out that they indeed do not have a dietician trained or the software necessary to do the ketogenic diet for their patients. For that reason alone, I would think Tricare should cover all costs associated with the diet. However we will have to pay out of pocket for the outpatient visits and file an appeal with Tricare. But as far as we know the hospitalization required as Zane starts the diet should be covered. Despite any insurance troubles I am very optimistic about the diet. I know I will be able to handle the challenge of calculating, weighing and preparing Zane's meals. Obviously Zane is the one who will truly be tested and be doing all the hard work.