Its so hard to explain. My 1 month old daugher has continuous seizures when not on medication. Nobody can tell us why?? All of her test have come back normal. Her seizures seemed to be somewhat controlled when on medication but we still see seizure like movements atleast once an hour. Since she is on her medications she is rarely awake and also can not breath on her own. In combination with the seizures she has "burst suppression" so this is why we are unsure if her seizure like movements every hour are actually seizures or caused from the burst suppression. The Dr's are doing everything they can, but they don't know either. She has had 7 EEG's and they have all showed the same patterns, seizures and burst of suppression. She has had 1 MRI, normal. All metobolics test, normal. All neorology test, normal. Eye examinations, normal. Hearing test, normal. Two spinal taps, normal. All blood work, normal. Body altrasound, normal. Two brain altrasounds, normal. 7 EEG's definetly not normal. How can a 7 pound baby that is totally normal and looks so perfect be so sick? I guess what I want is an answer. Maybe the Dr's have told us and we just didn't want to hear it. I have done a lot of research over the last week on infants with continuous seizures and burst suppression and only have found one case where it suggest that the infant beat both conditions.
Sorry for the rant!! But are families are having trouble understanding and so are we. I am sure we are dealing with some of the best Dr's, but if you think you know of anybody out there that might be able to help, tell them about this BLOG and see what they say.
I am all ears.
Thanks Infant Carlee