Wednesday, June 10, 2009

Wait and see

Sleep, well I don't think I even need to mention it. It's pretty much nonexistent at this point. Every night Reagan is up and down nonstop until about 4-5, then that last little stretch she'll get in a solid 1-2hr and then she's usually up by 6:30 or 7am. Same thing every night. We're like walking zombies around here. Last night I did increase the B6 (from 25mg to 50mg) but we didn't see any improvement. I just don't know what is waking her up...is it nightmares, seizures, stomach pains??? I have no clue. I do know yesterday I was holding her and she had been asleep for about 5min or so and out of no where she threw herself into a ball and started screaming. She was screaming but not making a sound, her face was all red and her mouth wide open but nothing was coming out, she held her breath until she turned totally blue and could hold it no longer and then the real screaming started up. But there was no warning, no seizure, no gas, I don't know what it was but whatever it was just hit her all of a sudden and I have a feeling that's what's happening every night, all night long. I spoke to her neurologist today and he wants to see if the increase in B6 helps. If not then we may try an even higher dose of Melatonin (6mg) and if that doesn't work, then we'll just figure it out when we get back from Detroit. Her doctor thinks it's probably all related to taking her off of the Klonopin and he mentioned possibly trying Clonidine or Ativan sometime in the future but now is not the time to be adding new medications (even if it means more sleepless nights for us). Sophie's mom recommended trying Neurotonin, since it was the only thing that helped her sleep, but when I asked our neurologist about it he said he's concerned that it would only aggravate Reagan's myoclonic seizures (since she tends to be sensitive to drugs that have that side effect). So that's that. More wait and see...which is hard to do when you're so sleep deprived. Maybe Dr. Chugani will have a suggestion next week. I hope so. She has been a little congested the last few days. Originally I just thought it was from all the crying she's doing at night, but it doesn't seem to be going away during the day. It sounds more like spit accumulating in the back of her throat than real congestion, but it's hard to tell. Reagan's eye appt went well enough today. Her cataract surgeon said that there is definitely an opacity on that left eye. She can still get a red reflex (which means she can see to the back of the eye), so she's not super concerned about it, but it will have to be removed. She said it will probably get worse, it's just hard to say at what rate. If we have it removed within the next month or two, it should be fine. So she pretty much left it up to us to schedule the surgery when it's good for us. Personally, surgery is never good for me (especially 4 cataract surgeries) but whatever. I just hope and pray that this will be her very last one! Enough already.

6 comments:

Sarah said...

We are praying for your little girl every day. I hope something helps and soon.

Mira's mom,
Sarah

Lexie said...

I found your blog through the Safe Haven blog..I am aching for you so much right now! I cannot imagine the pain you are going through having to watch Reagan suffer, let alone with no sleep! Just know that I am thinking about your family and praying for you! I hope things can get a little easier..

blogzilly said...

I hope that next week you get some of the answers you are looking for. I can tell by the tone of your writing just how wiped out you really are. Sleep deprivation is one of the hardest things to cope with.

Jamie said...

I am with all those guys....Sleep depervation is the hardest thing..aside from watching your child go thru all this! I am so puzzeled by this and I really hope you find answers..instead of sleep aids!

Heather said...

Thank you for listening to my rants my friend.You are still my friend,aren't you??We all head to Detroit with you in spirit and in pray.Hoping and praying for answers and guidance.I wish I had the quick fix on the sleep thing too.Damn magic wand ....

Sophie's Story by Elaine said...

I really hope that Dr. Chugani has answers for you. I am bummed that we missed each other by only weeks. Do you have everything planned for your trip? If you have any questions at all, call me.

By the way, did your doctor say why he thought neurontin would aggravate her myoclonic seizures?