Tuesday, December 23, 2008

Christmas is Almost Here!

Nothing much has been happening around here, other than we are all excited about it being 2 days away from Christmas! It's funny how I just remember it being December 1st 15 minutes ago. December always burns by in a flash and suddenly it's Christmas?!

We moved Mira up to 100mg on the Lyrica over this past week and frankly, it doesn't seem to make a bit of difference. She seems significantly sleepier and overall a little doped up. She's having just as many seizures and the irritability factor is still present. We will give it a little while longer to see if the increased dosage will 'kick in' (maybe another week or so) but we are not optimistic. Mira's neuro didn't seem to think it would work, but it is certainly worth a try, since it's the only medication to ever work for her.

Mira is still taking the melatonin and still getting up in the middle of the night. We could either bump her dosage up or try a time-released brand of melatonin. The fact that she is able to get in a few solid blocks of sleep throughout the night is a dream (no pun intended) in comparison to what we were all going through a few months ago.

On the bed front, insurance denied our claim (the correct claim this time) with the explanation that our policy has an "exclusion" for anything but a 'regular hospital bed.' It's comical almost to imagine Mira sleeping SAFELY in a bed like that. Why yes, that seems safe to put my 3 1/2 year old child with severe dyspraxia and hypotonia in a bed with 12" side rails elevated off of the floor several feet. That makes sense.

So, we are currently looking into alternative funding sources available to us here in the area, through Mira's therapy group/school and some other local organizations. From what we have been told, there is funding available, we just need to apply. We were able to get part of Mira's stander and KidCart funded through similar groups in the past. We will see what happens and hopefully have Mira in a new bed not too far into January.

I did have a brief conversation with Mira's neuro about having her screened for a recently discovered Rett's Syndrome genetic variant called FOXG1. He is doing some research on it to see if it makes sense to have her screened for it. Mira was screened for MECP2 and CDKL5 (and the results were negative), the only two known and well documented genetic screens for Rett's. FOXG1 seems to be the third that is only recently coming into focus. At this stage, we will leave it up to her neuro to make the call whether it makes sense to have the screen done.

Sunday, December 7, 2008

Moving on Up

We didn't really notice any difference in adding the ranitidine over the past week, so we suspect that Mira's irritability is not due to reflux, but most likely, it's all just neurological. We increased her Lyrica dosage to 75mg daily and will hold there for a week, most likely moving up to 100mg next week. We will wait and see what happens.

Sarah and I are still having fun with the camera. We tend to get some good pictures (catching Mira is strange poses as though she is telling some 'big fish' story) but we still need some guidance on getting the most out of the camera. The beauty of digital is that you can take as many shots as you want without it costing a thing.

Mira is fairly consistent in her sleep these days. We have stopped giving her the trazadone and opted to just give her melatonin only. We give her 2.5mg before bedtime and she sleeps pretty solid until about 1am, then wakes up crying. We give her another 2.5mg and she sleeps until about 5:00am-6:00am and usually wakes up crying again, probably because she is hungry. She has been consistently doing this most of this week, which is actually a nice change of pace. I am personally glad the nightly inconsolable screaming fits have stopped for now, knock on wood!

Monday, December 1, 2008

Neurology Visit

Sarah called neurology this morning in hopes to schedule an appointment, which usually takes about 2-3 months just to get on the books. As luck would have it, someone cancelled this morning and we were able to get in this afternoon! We gave her neurologist an information dump as to what has been going on over the past few months. We all agreed to do a trial of ranitidine (Zantac) in hopes of targeting some of Mira's possible ailments. Since Mira can't tell us what is going on, we have to play 'Name that Fuss'. So at this point, our best guess is that all of her irritability could be reflux. So, either the ranitidine will give her some relief or it will do nothing. I hope and pray that it helps her and it's something very simple.

As for the seizures, we are going to do an increased trial of Lyrica after a few days of the ranitidine and see what happens. No one seemed to have any definitive suggestions at the appointment as what to try next in terms of seizure control, so this is our best option for now.