Please pray for our family. On Sunday my Rett syndrome dd had her first tonic clonic seizure. While seizure activity is 'expected' at some point in the life of a girl with Rett, we had only experienced petit mal seizures up until this point. Heather is 5 1/2. By monday she had 3 more and on the last one she was in the car on the way to the neurology dept. at UVA. She could not reboot her system and start breathing on her own after the last one. Dh performed cpr, met me back at the house where I had called 911 to meet us.
Our local ER knew nothing about Rett, overheard the attending ask UVA "just what is Rett anyway?" They took Heather and I by ambulance to UVA that night, though it was dh that had packed for the trip. He forgot to consider how violently car sick he gets and the first amb ride had already done him in. so I had nothing, no clothes or toothbrush and stuck up at UVA with my child. We didn't even have her diapers and such. What a mess. Dh traded with me tuesday, and I went home to tend to our other children who were sick with the virus that triggered the seizures in Heather.
She seized again Wednesday morning, twice. She was supposed to have been released, so I suppose it's good she did it in front of them. they had trouble believing I could tell a seizure from a bunion and spoke down to me the whole time. I was several days without sleep so I let them.
Dh had no such trouble due to his gender.
Heather finally came home on Thursday evening, sick as a little angel could be. She is now on her first of probably many anti seize medications. Keppra. Hard to tell the side effects if any as she is still quite ill with the bug.
They said if dh hadn't done cpr and called the amb. she would have died as the last seizure took so much out of her. Rett girls nervous systems are just going crazy the entire day, anything like a virus or immune attack sends them over the edge.
Tired, sick, run down and discouraged here. But glad my man and baby are home and that we caught this in time.