Sunday, March 6, 2011

New treatment

Our Neurologist said that Lila's EEG's are looking more and more abnormal. The abnormal bursts of electricity that were just in her left hemisphere are now also in her right. He thinks that even though she isn't manifesting physical signs he believes that she is having infantile spasms, or seizures. He recommends that we give her high doses of steroids. They don't know why it works but for some reason it can normalize the EEG's. It's pretty nerve racking to make these kind of decisions, but we have decided to go with his recommendation. Side effects are that she will be hungry (actually a good thing) she could get cranky and that she won't have an immune system. So we have to be really careful with her the next few weeks.
The Dr says that if this doesn't work we are nearing the end of his capabilities. We might need to think about seeing sub specialists around the country. Obviously this is pretty devastating. I feel like a broken record but please pray for us, pray for Lila please pray that this is what Lila needs and that she will be better. She has another EEG on the 23rd to see if her brain waves have normalized. We unfortunately have gotten use to waiting for bad news.
I am feeling pretty beat up and defeated. Lila, to me, seems to be regressing. We haven't heard her gorgeous voice in days and her visual activity has decreased. She also has stopped sucking on her hands, something that she was doing constantly a week ago. It's my worst nightmare realized. I pray that Heavenly Father is with us and especially with our little girl.


Sarah said...

Hi I am stopping by...was recommended by a friend a few months back that lives in your ward I believe.

I belong to this support group.

If your needing a place with people that know about Infatile spasms, feeding tubes, seizures, genetics's a good place to look into.


Barb said...

I'm so sorry. That is so scary to see her possibly regressing. I will definitely pray that this new treatment is the answer for little Lila.

Unknown said...

We will be praying for you and for her. Keep the faith!


Zane and Lexi said...

HF is with your little family. That I DO know. I've been thinking so much about you lately! You are constantly in my prayers. I love you Kris - stay strong. Lila needs you, Quinn needs you. You are so loved :)

Sandie-Matthew's Mom said...


Heavenly Father is absolutely with all of you and will give you wisdom to do what is best for Lila. Lila and you are in my prayers. If you want to talk, I'm here to listen to you.


Daphne A. Quist said...
This comment has been removed by the author.
Daphne A. Quist said...

Gosh, I need to go back to school- miss spelled a ton of words the first go around! :) it's been a while since I spent time reading blogs, but glad to know I'm still up to date with what's going on! Hang in there and keep catching those curve balls life has thrown you! You'll be grateful one day for the strength and growth these challenges have given you, I promise. Love you guys!!