Friday, April 25, 2008

New seizure video

Today has been an alright day. Reagan has been a little whiny, but whiny is better than crying! She has been having a lot of seizures though. They have changed a little and I'm not sure if that's because of or in spite of the Felbatol. I videotaped them today so we have documentation of what they look like now. She's having a lot of little spasms, where just her arm or shoulder will jerk. I'm glad that she's not having the huge ones anymore...but I don't know if these subtle ones are much better because they are so frequent. And she's also having these clusters where she'll have a bigger crunch, her eyes will roll back and it seems to leave her a little dazed, and then she'll have several small jerks that follow it (see video). These are my least favorite. Before she never seemed phased at all by her seizures, if anything she would just smile after having one. Now she seems really stunned for a few seconds and I don't like that at all. I don't know if this change has anything to do with the Felbatol or not. Supposedly, she's still on a fairly low dose...but I think at this point we should begin seeing some sort of improvement if it is going to work at all. I just want something to work! Zonegran was the only medication that has ever had any positive effect on her spasms. I remember when she was on it and only having ~30 spasms a day...about 10x less than she has now! But the thing is...any spasms (no matter how few) are still significant and can affect their development. Please keep her in your prayers...


video

This is just a small snippet of spasms she had during this ~30min cluster. When the spasms are this frequent it's hard to tell where one cluster ends and the next begins. I figured this was enough to show everyone what I am talking about. It's hard for me to watch and I see them all day long...

5 comments:

Heather said...

I am so sorry the day has held so many darn seizures.
The video literally made me jump and was a stark reminder of what these children endure on a daily basis. Only those of us who have had to watch our children deal with these can know your pain. I do know your pain and I pray each morning and every evening before I close my eyes for Reagan to be free of these. I pray for you all too. I won't stop. I enjoyed our talk and I hope you know I can talk every day if need be to help you on this journey.

Till next time, Heather

MOM said...

No matter how may times, I have held her in my arms during these seizures.....watching the video really confirms how difficult these spasms are for her.....and you... and all of us that love her!

I just want ALL of the people that are on Reagan's prayer chain to come together TODAY and lift her name in prayer.
"Incline thine ear unto my sayings. Let them not depart from thine eyes; keep them in the midst of thine heart. For they are life unto those who find them and health to all their flesh."

I love you.....The Grandma

Kristen said...

The video made me cry. I can't believe that this little girl has to go through all this. I can't believe that you, as a mom, have to hold her through this. It just seems so cruel. I wish I had words to describe how terrible I feel and how much I wish there was something I could do to help. I am praying... I always pray for all of you!!! I'm so sorry. Tera, I love you and am so inspired by your strength through all of this. Sending my love and hugs to all three of you!

Kristen

Dawson said...

Praying for you tonight that these seizurs will stop and she will be healed

Kim said...

That is exactly what Lily did.
{{{{HUGS}}}}