My daughter has a sesure disorder but latley she has gotten worse. She is having longer sesures and has also started having them at night. I have watched her get progressively worse sence she first started having spasums.
But what concerns me is that latley she has been having very weard uncontrolled movements and eye blinking ontop of the dailey sesures. She also rolls over to her side and puts her hands to gether draws her legs up and makes grunting sounds while trying, what looks like to roll over but she never does. I know that this behaver is not normal and I am very concerned because it is getting worse. Any one else in a simallar situation.

is her pediatrician aware of this?has she been evaluated by an actual ped neurologist?what have you been told so far about these "episodes"?marcia

My little girl did something similar to this when she was around 6 months old. She had infantile spasms. If this is what it is, she should be checked out. Look it up and see if her symptoms fit. It's also called West Syndrome.

Yes doc knows. Just got back from children's hospital. Nero doc is testing for a form of rett's called cdkl-5 prognosios not good.

My little girl did something similar to this when she was around 6 months old. She had infantile spasms. If this is what it is, she should be checked out. Look it up and see if her symptoms fit. It's also called West Syndrome.

Does your daughter have West syndrome? They are testing for a form of Retts in my daughter. Just got out of the hospital doing treatments for the infentile spasms for 2 weeks.:(

Yes, my little girl had West Syndrome. She is 2 now and hasn't had any problems since we stopped treatment over a year and a half ago. I was fortunate to catch it early. We did ACTH and it really swelled her up. She looked so different and was very lethargic.
I know how hard it is to go through something like this and my heart goes out to you and your little girl. I hope they find out soon what's going on. You are in my thoughts and prayers.
Big Hugs,
Sheri

Thankyou so much her retts test came back neg and now they want to do more testing the Acth did help, however she is also having a lot of side affects from it. It is hard especally because she is not gaining any more mildstones and her head has stopped going for four months now. The worst part is the waiting game. Is your child doing better now. Did the seasures affect the learning prosses?
gretchen

hi my 6 month old son has been doing the same movements and 4 days ago another mom mentioned west syndrome on here, now i'm trying to get the neuro doctors to do the tests. my son sounds just like your child, i know how hard it is and watching it get worse, i pray for you and hope the treatments work.