Sunday, June 7, 2009

Nothing's working

Still no success with the Melatonin. Reagan was up and down a lot of the night last night. She slept from 7pm-12:30am, but after that she was up at least once an hour. Of course she did have two dirty diapers last night so that might have played some role in all of the waking and fussing. We were trying a higher dose of Melatonin, since the first time we tried it the 1mg pill seemed to have no effect whatsoever. Now we're using a 3mg pill and still not seeing any benefit...if anything she's sleeping worse! I just think if she were going to respond to it, it would have been immediate. I think tonight we're going to skip it. Maybe she needs a higher dose? But 3mg is already pretty high, so I don't know about increasing it further. Maybe I'll call the neurologist tomorrow and ask him about it. I already have to call and ask them what we should do next with the Keppra. Seizures have been frustrating lately for us and for Reagan! Sometimes they'll wake her when she's sleeping and other times they are the reason for her whining/fussing...because she'll calm down as soon as she has one. Ugh. I hate these things! Maybe after all the testing in Detroit, Dr. Chugani will have a better idea as to which medication would be more effective in stopping these nasty seizures. That's what we're praying for anyway. This poor girl has had NO relief! This afternoon she's been a little off. Very groggy and very fussy. She'd fall asleep then wake up 15min later screaming. She's starting out of the sofa tonight. Please keep her in your prayers.

3 comments:

Karen Owens said...

poor little girl. I pray so hard you all from some rest!

blogzilly said...

Lately our son has become somewhat inconsolable a lot of the time, not sure why. Seems irritable a lot, fussy, it's definitely different for him, he was not like this before. It is so freakin' frustrating, hope you guys can get some relief soon.

Debbie said...

I just mentioned that same thing to our neuro at our last visit. (He was somewhat baffled!)Hudson went through a phase 2 months ago where he was having minimal seizures but was MISERABLE, crying and unconsolable, as soon as a cluster of seizures would hit, he was as calm as could be. It really stinks when it takes a *seizure* to have a calm baby...ugh! They put him on Leucovorin during that time (still on it) to see if that would help, not sure that helped or just returning to frequent daily seizures helped.
Praying for you for sleep and relief with seizures.

www.caringbridge.org/visit/hudson