Tuesday, August 12, 2008


We are home from a long day and a half at the hospital. The EEG went great. Hewitt did an amazing job of hanging out in bed for most of that time. We caught at the very least 100 seizures, so we know the epileptologist should have a good read in the next few days or weeks. I will post an update when we hear. I don't know yet if it will change the diagnosis or not...at this point I don't really care unless it's to something more serious. We also had an opthamologist appointment today to rule out some more serious conditions relating to brain degeneration. PRAISE GOD! Everything looked perfect in his vision and his little eyes. The opthamologist felt confident enough to say he felt positive that there weren't other things happening. We were looking for signs of Batten's disease, and mitochondrial disorders... things that most likely end in death or severe cognitive changes. I am praising God those are not roads we will be walking down, and find myself being thankful it's "just" seizures right now I think I have had the most anxiety about this than any other test so far. I am thankful it is over and will be looking for news from the epileptologist.

We now have a third opinion scheduled at Swedish Medical Center with another epileptologist/neurologist. It is September 5th. After that we meet with nutrition at Children's on September 29th, unless Swedish can do something sooner. We are thankful we have so many options now. After speaking with the neurologist today I was feeling a little discouraged about treatment options and communication between us. So, a third opinion is sounding great. At this point we aren't changing anything in his treatment. We're going to start eliminating some possible food allergens from his diet, we've already started with sugar. The neurologist today suggesting adding a new med but we told her we'd rather wait for a diet and see how it goes. I don't feel a lot of confidence in meds at this point for the drops, absences and myoclonic seizures. Thankful they're stopping the tonic clonics, but not ready to get him all doped up again. Thank you for your prayers and support. I will be posting pics of the boys at my parents when I get a chance.

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