Just got back from hospital

October 20, 2004

Hey friends,

Well, we just got home from another overnight EEG. I couldn't believe that

was so good in getting the " rainbow buttons " on his head and did

well. We got to come home a day early because he had so many seizures

yesterday that they got enough info. I guess that is good. They are still

little

tiny head drops that cluster for sometimes hours.

Our new neuro wants us to take him off the diet and try the drugs again and

possibly the VNS or corpus collosotomy. Keep in mind, there is no dietician

at our hospital and our neuro has no patients on the keto diet. We have been

taking him to Chicago for the last 2.5 to 3 years to have the diet done.

THe doctorr there dosen't accept our insurance , we have to pay cash and hotel

and food etc. and our insurance won't pay for him anymore because he is EEG

happy so I say and they say is ordering excessive tests. My hubby and I are

tapped out financially.

My heart tells me that the only true hope that my little boy has is to get

off this Atkins diet and go back on the keto diet. I logged on to the Charlie

Foundation last night and read Jim Abrams story about the drugs and remind

myself that the diet is not as bad as the alternative. is

regresssing daily as we speak. He is getting weaker, speech extremely slurred

and

can barely use his hands. It is a slow deterioration that we saw pre diet the

last go around. I remind myself of how far he has come and if it weren'tfor

the diet, I don not know where we would be.

So, my question to you is, if we go back on keto diet as a last time try,

do you think since he is on Atkins now and in ketosis that I could just get

my mealplanner out and start again or would we have to go back in and start

over. I just don't see the need to put him in the hospital again.. He would

be very welcoming of the fruit and other things he got on the keto diet. He

already gets cream and butter with every meal and as snacks.

What do you think? I don't know how many calories, protien etc. Can

someone help me until we find a dietician here?

Thanks

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