Update: the night we went to ER all of the hospitals were too full so they were going to send us to LA. Which at the time was impossible for us, and I promised the ER doctor I would make a neurology follow up appointment asap and I did with a different neurologist, thank goodness... So he has a neuro apt next week on thursday with Dr.Knudsen at citrus heights. He has seen conner once before and we loved him but didnt stick with him because he wasnt paneled with CCS. And he normally isnt in patient at hospital. But i dont care, we like him and Im PRAYING he will be willing to start conner on either Keto diet or Rapomycin. There was a doctor that I called and spoke to personally that was on a CNN story and he helped gain alot of insight. He said that treating conners seizures is nice but its just a band-aid. he has them because of his tumors....and irregularity in his brain, if we was put on tumor shrinking medicine (Hence the rapomycin) we would be reaching the root of the problem which makes so much since. When conner was in the ER last time too i forgot to mention that I thought he wasnt breathing through his seizures and while at ER we was actually breathing but very shallow which makes me feel better so thats why I felt comfortable enough to go home. Conner has been having about 1 grand mal seizure a day and about 20-30 infantile spasms a day. So we need to get him going on something else asap.
Posted on: Thu, 03 Oct 2013 05:14:17 +0000
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