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!
2 comments:
hi! My husband happened upon your site...what an adorable girl you have! She's beautiful. The thing that struck us both so hard is how much she looks like our daughter. We have a 10 year old, Noelle with West Syndrome. I haven't had a chance to read your whole story yet, but just wanted to say hi. The thing that makes them look so alike is the body language...I totally recognize the "big fish story" pose, and others. I wonder what makes that so similar?
Marc,
How's Mira doing on the Lyrica nowadays? We dropped Aidan's Lyrica over a month ago and slowly things got worse. His Neuro added Clobazam back and we're hoping that will help until Banzel (rufinamide) becomes available by prescription in January. I think the Lyrica was doing a lot more than what they thought.
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