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surgery and need some support

Mon, 11/25/2013 - 21:58
My daughter is 18 and has special needs (she does walk/talk etcc) and functions at a low age range. She was born with Hypo plastic left heart syndrome and critical aortic stenosis and as a result crased many times. SHe suffered a severe brain bleed on left side of brain and a stroke as well. Her first seizure was when she was 5 (grand mal) and those last til age of about 13 where they then stopped and she then changed into partial (simple and complex) seizures. Started just here and there but now, years later has many a day. She is fully maxed out on doses of keppra and lamictal but nothing will stop them. SHe been having testing at cleveland clinic and just got home last week from having an intracranial EEG,(drilled 12 holes in skull and places electrodes into the brain where the seizures are happening). Good news is that there is only one original place from stroked area misfiring but once that misfires it then branches out to many places from there causing her different symptoms. They did the stimulation and have come to the conclusion she is a candidate for surgery. The one concern they have is her fielf of vison. She already has speech impediments and memory issues and so they said these, if affected would be minimal. They are confident she will not lose vision, speech, memory and if they are affected, they feel in time they would be back where they are now with exception of field of vision. This was hard to test on here and tests were inconclusive but we have always known she has depth perception issues and already may have fielf of vision issues thats shes just adapted to over the years. Sorry this was so long, but I'm desperatley looking to talk to others that have been through this. I feel like were going about this alone and could use the support. Laura, mom to Kailey Marie

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