Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 We recently inquired into the Vagus Nerve Stimulator but did not qualify. , Why didn't Kirk qualify? Just curious. . . . How is he doing? I hope he is doing better with the Bi-PAP=) e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 Another main consideration was the fact that he isn't able to handle his secretions. Apparently, when the stimulator sends impulses, the patient feels it and needs to know enough to stop swallowing for a moment until the impulse is sent otherwise there's a risk of aspiration. , Just read your response to Kim, so you don't need to reply to mine. Thanks for the info, though. Chelsea's drs have mentioned the VNS, if meds continue to fail. She also has issues with managing her secretions, so this is something I will have to keep in mind. . . I am sorry to hear about your struggles with the keto diet. I think we have all been thru situations like that. If I had not been so resistant to the gtube in the first place, would Chelsea have crashed and gotten so sick? Now I wonder if we had known she had Rett Syndrome way back then, if that would have changed anything. Questions that will never be answered. . . e, Chelsea's mom, Atypical Rett Syndrome Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 , Oops. I accidentally deleted your reply. Chelsea is not under eval for the VNS just yet, but it has been mentioned, because of her difficult epilepsy. What meds is Kirk currently on? How are they working? Chelsea is on Keppra 1500mgs/day & Lamictal 75 mgs am/100 pm. SHe is doing fairly well, but it seems something sets off one and then they escalate until her meds are upped. Her neuro put her on the Lamictal after we maxed her on Keppra, and he said that on 2 drugs, we would have a little more room to "play" with dosage to get control. e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific Mito) Quote Link to comment Share on other sites More sharing options...
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