Saturday, August 22, 2009

Better day

Reagan had a much, much better day today. We all got a good night's sleep last night too...thank God! We didn't do much today, just tried to recoup after yesterday's drama. Reagan had a few questionable moments, where her tummy was giving her problems yet again, but she managed to pull out of it and end on a good note. She was so smiley and sweet tonight...she can be such a darling when she's happy and feeling well. I increased her Clobazam this morning, so far no changes in seizures. Still having too many of the myo-tonics; I hate those. It's the fact that they seem to really upset her that bothers me the most. I'm just praying that we'll see some relief from increasing the Clobazam, if not, the next step will be Banzel. Please keep her in your prayers. I promise to post some sweet pictures of the little princess tomorrow.

2 comments:

Rhea said...

Glad to hear that you had a better day. Since we started the vitamins Anna has had some seizures - it's so hard to know what to do. She did fine on valproic acid, but I don't like the side effects. They are telling me that it takes time for the vitamins to work. Pray that I will be patient! Continuing to pray for Reagan!!!

Anonymous said...

If you try the Banzel, let me just throw a precaution out there...it made Hudson's seizures far worse. If you see an increase or intensity in seizures as you titrate up on the drug, it may have the reverse effect!

It stinks that you have to "try" drugs and wait and see what it will do, like our kids physically go on a roller coaster and as parents it's an emotional roller coaster watching the ride.

No one forewarned us, I had high hopes for this drug, and I have heard for many it has made seizures worse.

I am not trying to be discouraging, I pray if you have to use this drug it will help knock the seizures down, but just giving you a heads up, as I wish I would have known.

Hope today is a good day for Reagan and all of you!

Deb & Hudson
caringbridge.org/visit/hudson