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.

5 comments:

Kim Ayres said...

Hope the medication works - my thoughts ar with you.

LeslieAnn said...

First off, Sheena is beautiful. I am so sorry she is having IS. I have never heard of them and wish I could give you some information/advice. The internet is a scary place when you are researching medical jargon!! I hope she does well with her medications and the IS responds to it. Thank you for stopping by our new blog!

Hugs to you and Sheena!
Leslie :)

RNP said...

I hope the medication works as well. Miss E has had a few seizure-but not IS.

Michelle said...

I don't have any experience with the IS, but I hope this medication works for her. Sorry to hear she has this to deal with :( Prayers are with you all.

Tara Marie said...

Hoping the medication is working well and I will keep your sweet little girl in my thoughts for positive results with the meds. She is so incredibly beautiful!