Andrew had an appointment with his neurologist today. He had his usual EEG prior to the actual appointment. Needless to say it was supposed to be sleep deprived and I think the EEG leads should have been hooked to my head instead of his! I was tired and he was wound for sound! He was able to relax enough to get a good 40 min EEG. The Neurologist saw us in the afternoon. He was very happy to see that Andrew was walking..BUT... He was not happy with the EEG results. They weren't better but they weren't worse either. He then told me what I already knew; that Andrew did the best when he was on the ACTH. He does not want to rush back into that, so the next step is to try the ketogenic diet. Unfortunately for us there is not a good Keto Dietician at DHMC. Now we will have to go to Children's Hospital in Boston; not just once, but twice!!! First for a consult with the neurologist that would be in charge of his care while we start the Keto diet, then back down to be admitted for 3 or more days to start the diet. It is very intense training each day regarding what he can, and can NOT eat. The good thing is it is a sugar free diet, so we'll try to make our house sugar free. This could benefit all of us.
So, now we wait for the phone call for the consult. Then this poor country mouse and hopefully Allen will drive to Boston. Oh, the adventures Andrew has been on and he is only 3!
My Dad is home now and sounded like he was feeling a little better. Yeah for Mom and Dad! He got home just in time for Mom's Birthday! What a present.
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Hi my name is Cristy Quire, I was reading about Andrew and saw that you was going to try the keto diet. I wanted to share my story with you, My son Matthew he was born healthy baby boy when he was about two years old he had a seizure. It got worse from there from the age 2 to 6 Matt would have up to 300 seizures a day. He did not speak at all and the doctors told us he he would never live on his own. We tried the Keto diet, it did not work well enough for him to force him to starve all the time. he was on 6 different types of med's he still had about 300 hundred a day. We looked into the Vega nerve stimulator when Matt was three we was told that their was not proof that it would help his type of epilepsy, So we decided not to get it. I regret it now. When Matt was Six we decided to do the Vega nerve stimulator. within six weeks the seizures had decreased and within one year they had stopped, he started to talk and now Matt is 11 years old he has been med free for three years and seizure free for over four years. I would recommend the VNS to anyone who has a seizure disorder. Well thats my story, i just wanted to share my experiences.My prayer are with your family.
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