Friday, September 25, 2009

Wits end

Today has been a rough one. For Reagan and for me. Sleep was fine last night, but this morning just as her Feldenkrais lesson began, Reagan had a major meltdown. 4.5hrs of nonstop screaming crying, a nap, and then on and off crying for the rest of the afternoon/night. We had to cancel her feeding therapy and good thing we did because it would have been one miserable session. I'm not sure what was bothering her, tummy pains if I had to guess, but the seizures were ridiculously bad as well. She had nonstop twitches and seizures pretty much all day long. She's also having way more of the bigger ones and they are morphing more into just plain old tonic seizures. For a while we were calling them myo-tonics because they were brief and only her arms would stiffen out, but now they are moving all the way through her body, her back is arching and her legs are stiffening out as well. I really hate these. And it's just so frustrating that things seem to be getting worse rather than better. We're seriously running out of medications! What are we going to try next?!?! one seems to care. There's no sense of urgency. No one (other than us) seems concerned by the fact that our daughter is literally having 1000+ seizures a day! Are the doctors just that jaded or is there really NOTHING they can do to help? Our neurologist has been out of the office for 10 days straight, so it's not even like we can call and talk to him about it. But even if he were here, he wouldn't do anything. Here we are 2yrs into Infantile Spasms and Reagan hasn't had a single seizure free day or even responded positively to any of the 14 medications she's tried! I'm beyond frustrated. I was thinking about this today, as my mom was holding a screaming Reagan in the other room, and I started feeling lightheaded. I don't know if that's the right term, vertigo is probably a better explanation of it. I was in the kitchen, I bent over and when I stood back up the sink was moving back and forth in front of me. I felt like I was on a boat. It was really bad at first and I was afraid I might fall over (thank goodness I wasn't holding Reagan), and even though it lessened over time, I could still feel it hours later. It was very strange. I've never experienced anything like it. Hopefully it was just stress and not a big deal. On a positive note, right before Reagan went to bed tonight, she really turned things around. She was being super cute and talkative. Whispering sweet nothings in her Daddy's ear! Hopefully that means she's feeling better and she'll sleep well tonight and wake a changed baby tomorrow. Please keep her in your prayers, it's been a rough day and we sure need a good one tomorrow!


Heather said...

Hoping and praying sleep found everyone tonight.I wanted to cry as I read this post.I feel so absolutely helpless.My words fall short and I am left with nothing except to pray like crazy that something,anything would lift this from precious Reagan.I am so sorry you had that episode.I know a thing or two about vertigo,as you know as it is with me everyday of my life so we'll talk but I am thinking it is a combination of stress and extreme sleep deprivation for you.Praying hard here for you and most especially Reagan.We love you guys.I sure wish that were enough.

Sarah said...

We are always praying hard for your sweet Reagan. I completely understand the kind of day you've had. I hope that tomorrow is much better and that soon there is some relief for Reagan and for you and her dad. This infantile spasms road is a hard one.

With love and prayers, Sarah (Mira's mom)

blogzilly said...

Yeah you definitely might be experiencing some kind of physical manifestation of what you are feeling experiencing. As someone who has PTS, it can get very real and very scary, so check it out.

I don't know what to say about any of the other stuff. I'm often struck dumb in situations where nothing is working. Wish there was something that could be done to get the seizures to stop.

Kristine said...

I agree with the other comments...vertigo was my only symptom when I used to have panic attacks. Try to take 5 minutes a day to do some relaxation will make a big difference. You don't want panic me.

Perhaps you need to read this post to Reagan's doctor. Maybe it'll awaken a tiny bit of new interest. It's hard to know what to do isn't it.

Thinking of you both!! :)

Debbie said...

I know your frustration, your worries, your times I feel like we are sorta on the same path, same time line with our kiddos... with seizures, meds, emotions...know I am shouldering this burden right along with you! I am sorry to hear it is effecting your health...I know eventually the stress of all that we endure creeps up sooner or later!

Hudson's seizures got much, much worse on the Rufinamide and they were constant. I remember one day coming home from the grocery store and seeing him sitting in his chair, breathing heavy, eyes heavy, very distant, not aware of much and I sat and cried thinking he was deterioating right in front of my eyes...he was at the highest dose of Ruf. and he was at his worst as he was pretty much in this seizure/unaware state! The next day I called the nuero and we took him off immediately, that day the wean began!
Unfortunately it can actually make the seizures worse for some...that is what I was told.If the seizures remain that bad, I would talk to the nuero on-call who is taking over while your Dr. is out.

Know I am praying today is going better for all of you. I keep thinking there has got to be SOMETHING out there that can help stop these seizures for both our babies! Sending hugs and prayers!

Rhea said...

I care - she is always in our prayers. You guys are too. Anna has been seizure free for 16 days and no medications, just the vitamins and amino solutions. Another Mom emailed me about it and she is going to try it also. Let me know if you want info on it. I know that you are so frustrated!!!