Tuesday, October 9, 2012

Bad days begin

They're back. I was really hoping to avoid them, but they've crept back into our lives and my poor girl is paying the price! I'm of course, talking about the bad days. Reagan slept all night last night and then slept in this morning til around 11am. The fact that she was sleeping in, made me nervous in and of itself. I had a doctors appt this morning, so I reluctantly left Reagan at home (still asleep) with her nurse, and Ryan and I went to my appt. Thankfully, she woke up OK. She was actually OK all day long. No smiles, slightly easily agitated, but she was OK. She even had a great session with her new OT. As the afternoon went on, I could tell we were skating on thin ice. Then tonight at 7pm it hit her. She started crying and cried nonstop til 9:30pm or so (I gave her Lortab but it didn't do a thing). Watching her cry like that is just heartbreaking. It literally is torture as a parent to watch your child suffer and there is not a thing you can do to help them! When she finally calmed down, she was quiet in her chair, but still very stressed and easily upset...she didn't want you to even look at her! She had another meltdown when we changed her diaper, but fell asleep after I gave her clonidine. Thank God tonight is the night our night nurse is here! Please keep it in your prayers that she gets some sleep tonight and wakes without tears tomorrow!!! Praying for the shortest bad streak yet!


Diane said...

Oh NO! Poor little one :-( Hoping it was only 1 bad day and not a bad streak!

Kyla said...

Oh, poor sweetie! I'm sorry she's feeling so rough.

Anonymous said...

I emailed you this, but just wanted to ensure you saw my email (and it didn't get silently deleted as spam instead).

Have you ever tested Reagan for Dravet Syndrome?

She's unlikely to have it, but there have been people with both a mitochondrial disorder and Dravet Syndrome. I've only spent a few minutes reading your blog, so I don't know Reagan's entire story. She may have symptoms that would make a Dravet Syndrome component unlikely. However, I did notice that both Lamictal and Vigabatrin/Sabril caused an increase in seizures. These are two of the drugs that are contraindicated for Dravet Syndrome. If you haven't already you may want to have her SCN1a gene tested.

Reagan Leigh said...

I'm not positive whether or not she's been tested for it, but I have heard of it (and no, I did not get your email). We have a geneticist friend that has sequenced all of our entire genomes, so I would think it's something he could easily check!! Thank you for the suggestion!