We are all packed up and ready to go for our 24 hour vEEG. I have been pushing for it thinking that he would schedule us sooner than next month with all the recent activity. I called this morning about her increased spasms and CP seizures and left a message. A few hours later he called and left a message that he wanted to get us in tomorrow morning. EEG called us by 2PM and had us scheduled for 8AM tomorrow morning. Dr. Neuro mentioned in his message that he wanted to talk to us about treatment if the EEG reveals what we think it will reveal, that she is in fact having more clusters and complex partials. I am not sure if we will still be going in the same direction we had planned after he said that.
Kay isn't really sleeping well at night. We think that she may be having seizures at night, since this all began at the same time we noticed the increase in activity and before we increased the Topamax dose. Today the count for seizures I witnessed was two clusters and two CP's. Clusters usually last a little while, so I feel like I can catch most of those. Some of her CP's only last for a few seconds so there's a good chance I missed some, since I cannot hover over her all day (who can? She's always on the move, crawling around and getting in to everything! the little stinker!).
I will send updates from the hospital. I guess we will find out more info after he reads the EEG. Hoping for the best, but still preparing for what may lie ahead.
8 comments:
Good luck today. I pray that you get some answers and the Dr can give you a good treatment plan that will help sweet little Kay. I'm glad the Dr decided not to wait. that is such agony waiting on tests when you are pretty clear on what is going on. As far as the sleep goes, i'm right there with you. Connor wakes up everynight around 2am with his seizures (we assume that is what is waking him from a sound sleep.) Let us know how it goes!! hugs, monica
Lots of positive thoughts headed your way. I hope Kay cooperates!
Monica, thanks! We really hope that we can stop the seizures, if that is in fact, what's happening. Still a chance that I'm wrong.
Jen, I hope so too. I'm just hoping they know she is not planning on holding still ;)
We just did an EEG yesterday with Charlie, but it was only a 1 hour one. I will send a prayer your way. The hardest part is getting them to settle to put all those leads on their heads!
Take care,
Molli
Holy smokes! I must be behind the times, I didn't notice this was going on!
I'll be praying for all of you! I hope that everything works out.
prayers & mushy love!!! i've been thinking about u guys a lot - prayed for u the whole trip home yesterday after i saw mark's tweet....i hope everything goes smoothly!
((((((((hugs))))))))))
...danielle
thanks everyone!
Post a Comment