Tuesday, October 6, 2009

Not a good day for therapy

Reagan has been a little off today. She didn't sleep well last night. She woke up around 4 and we put her in our bed where she fussed and tossed and turned until her regular wake up time at 7. She seemed well enough, drank her bottle and took her medicine. Grandma accompanied us to aquatic therapy and she was a little whiny on the way in. When I handed her over to the therapist and she took her into the water, that was it, she lost it! She seriously cried the entire session. I have to give it to her therapist...she tried her best to soothe her. She swirled her around in the water while singing to her, it should have been very relaxing, and finally about 35min into it she fell asleep (in the water). I don't know if it was the lack of sleep or what but she was not cooperative today. Every time she'd doze off, she'd wake up 10min or so later fussing and crying. Many times it was a seizure (a big tonic seizure) that woke her up and other times when she would just wake up screaming. I don't know what I'm going to do with this girl! I really don't think Banzel is helping at all (and it may be making things worse). I went ahead with the last increase tonight, she's now at 1pill 2x day. I'll probably put a call in to her neurologist tomorrow to find out what our next plan of action will be. How fast can she come off of this stuff? I don't mind keeping her on this dose for a few days, but if we don't see any improvement, I want her off. And quickly. I don't want to take another 2 months to wean her off of it. So frustrating. I hate it that we're going to have to look for something else to try. Why couldn't Banzel have done the trick? Why is it that Reagan does not respond positively to ANY seizure medications?!?! Frustrating to say the least. I just hope she's able to get some rest tonight and that she has a better day tomorrow. She has PT tomorrow morning with the same therapist, so for her sake I hope Reagan is in a better mood! Please keep our little one in your prayers!

1 comment:

Debbie said...

I am so sorry to hear Banzel isn't the answer...Hudson was at that same dose at his max, and I think he was on it for a week when I finally spoke to the Mito nurse and she told me to wean. So we weaned the same way we went up on the drug, taking him down a half tablet at a time...it always takes so long, both directions...you want them on to see if it is the magic pill, you want them off when it isn't...all such a stinkin process!!!

Anyways, I know how you feel...our last ditch effort drug is not doing it...some days seems like things have improved with 1 or 2 tonics, then bam...the next day he has 5 of them! No rhyme or reason in this world of seizures!

Prayin for Reagan always! :)