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Surgery on a 3-year-old
Fri, 07/28/2006 - 21:45Topic: Surgery and Devices
Hello,
Our 3-year-old daughter has had seizures since she was 9 mo old. She was diagnosed with infantile spasms. She is significantly developmentally delayed, on numerous medication and still has between 0 and 6 seizures a night (almost exclusively in sleep). We just found out that she is a surgical candidate and we are hoping that she will have her operation soon at Boston Children's (Dr. Madsen). My greatest concern is for the "invasive monitoring" which sounds awful not to mention our inability to explain any of this to our poor, unsuspecting little girl. It seems that her seizures are originating from the right temporal/frontal regions. Does anyone hae any words of wisdom on this topic?
TIA
jessicarozen@yahoo.com
Re: Surgery on a 3-year-old
Submitted by CLC on Sun, 2006-08-06 - 12:09
My son had surgery last year. The invasive monitoring they mentioned is probably the grid that they will place on the surface of her brain to map the seizure activity. When Connor had it done they took him into hospital about a week before the actual ressection to place the grid on. Then they used the same "opening" to perform the ressection. While in hospital he had to stay in bed - because he was attached to the machines, but we brought lots of movies and games to play with him. He also slept a lot. Just from boredom I think. They will wrap her head with lots of bandages (like a hat) and it shouldn't be too uncomfortable for her. Connor didn't show any signs of pain - he was realitively pleasant for the whole experience. He also has a severe developmental disability - he didn't understand what was happening but as long as we were there - he was happy. I guess that's the saving grace for these little ones. It's harder on mom and dad to keep their chins up. I hope all goes well. If you have any other questions let me know clfetterly@gmail.com Take care. CLC