Sunday, June 29, 2008

Better

Reagan has been in a much better mood today than yesterday (thank goodness because she was a challenge yesterday). She still sounds "stuffy" but I guess she must be feeling a little better. She wore her AFOs for a little longer today...3hrs...we'll increase it to 4 tomorrow. They don't seem to bother her too much. Her ankles and heels are a little red after taking them off, but they don't stay that way long enough to be worried. She's still having A LOT of seizures, but luckily no more tonics. The clonazepam doesn't seem to be doing anything anymore...even with the recent increase. I think it's time to move on to something else. I'm fairly certain that it's responsible for her being so "floppy" lately...I'll be glad to see her off this medication and more alert again. Hopefully we'll hear from her new neurologist sometime tomorrow to discuss what to do now (that the diet is obviously not working for her). I can't stand watching her have this many seizures so I welcome the chance at trying something new. I'm also expecting the dietitian to call to let us know what we need to do to decrease the ratio of the diet down to 2:1. Please keep Reagan in your prayers and pray for guidance for her doctor in choosing which direction to go next in her treatment.

4 comments:

Sophie's Story by Elaine said...

I am glad to read that Reagan was in a better mood today. I can't imagine what you all went through on Friday. As a mother, that must have been so hard to watch. My heart goes out to you and Reagan. Hopefully, the next direction the neuro takes you will be the turning point in Reagan's seizures.

((((hugs))))

Heather said...

Always love to check in and see that one day was better than the last. We begin a new day right along with you all tomorrow and begin it with tons of prayers that the new "plan" will bring Reagan some relief and you some peace right along with her.Let your faith lead you and God guide you and our Lord carry you.You are all doing an amazing job and I stand in awe of your strength and courage.

JSmith5780 said...

Hopefully the new neuro (Dr R?) has some good ideas. I don't remember what meds you have tried but I am sure there are many more to go. It took us I think 6 or 7 meds (and close to 8 months) to finally try the right med.

Dawson said...

Has there been any talk about using Topamax or Lamactil. I know each kid is going to respond differently to different meds but you never know. The Topamax helped slow down Dawson's seizures and it only took a very small amount of Lamactil (4mg) added with the Topamax to stop them. We are praying that she gets whatever meds she needs to have relief and SOON!! Give her a hug from her friends in Alabama