Thursday, August 31, 2006
Another one for the road
Little Sheena is having Infantile Spasms (IS). As far as epilepsy is concerned, this is not the type to have. However, if you have Infantile Spasms, you are better off if you have Down Syndrome.
Apparently babies with DS, sometimes respond better to treatment, and they also don't have severe outcomes from the condition than what is generally seen. That is not to say that this is a good news, however I am clinging to this hope.
Had a relapse of the horrible dread feeling that I had when Sheena was born with DS. That feeling of being sick in the stomach, walking around with shoulders slumped, feeling numb, angry, why me, how will we cope, etc etc. It is a lot to process, and I have zero knowledge of infantile spasms, other than what I've read on the internet. Generally it doesn't sound good.
She is on medication, and if it works, we should see an improvement in 1-2 weeks. She had great patches today, as well as very irritable ones. The seizures come in clusters, so that explains why she is on and off.