Friday, August 8, 2014

The plan

So I'm afraid my girl didn't sleep much (if at all) last night. She was awake and smiley when we got up. So, it appears she's done with the worst of it, now if we could just get some solid sleep for her (in her bed...at night)! One thing I didn't mention in yesterday's post is our next steps. I spent much of the day on the phone and emailing back and forth with her medical team. What I found out is that her GI doc (the main one we need to be consulting with right now) is out of town until the 18th! Needless to say, this does NOT make me happy. Changes need to be made, and they need to be made NOW, not two weeks from now! Her nausea is out of control right now and since we can't increase her nortriptyline dosage (because of the abnormal EKG last week), we need to make a formula change (the only other thing we can do to try to help with it). So at our last GI appt he made a suggestion of switching her back to the pediatric compleat that she was put on when we first moved to Austin, while I like the idea that it's more "real food" than the elemental formulas she's been on, she didn't seem to have any improvement on it for a very long time! We can't wait a very long time! So my thoughts were to at least temporarily (while we wait for her dr to come back), switch her back over to the low calorie Nutramigen PurAmino formula that immediately stopped her nausea over a year ago when we first tried it (or was that just coincidence). It's obviously not a long term solution because of the calorie issues and she really can't afford to drop 10lbs again, but it's something we can try until we figure out what direction we're going to go. I'm leaning very heavily toward the ketogenic diet. She's been on it before, but it was for seizures, and while it didn't help her seizures, it's not to say that digestively she wouldn't do better on it. My thinking is this, if she's got a defect in the respiratory chain that processes sugars into energy (ie mitochondrial disease), then maybe putting her on a diet that is lower carb/sugar would give her digestive system a break?!?! That's my thinking anyway. We wouldn't go to the extreme ratios that are used in the actual ketogenic diet (4:1 or 3:1 fat to carb ratios) but maybe 1:1 or something similar? Anywho, once her GI doc gets back, we're going to sit down at another care conference and mull this over with her whole team. So, as for the rest of the day, she's been pretty good. She had OT, speech, AND school, and did great with them all! She also had her repeat EKG. This time we took her out of her chair and laid her flat on the table. She was perfect, so hopefully the results of the EKG will come out perfect as well! Tonight she's been sweet, but she keeps having bursts of energy where the chorea kicks into high gear! Every time I try to hold her, she starts making gaggy faces! Praying that she'll go to sleep and FINALLY get a good night's sleep IN HER BED! My girl needs some good days...

2 comments:

Diane said...

Your theory sounds good to me. If she did well on the diet before(for the seizures) sure makes sense to try that again?
I wonder if you could "rotate" through the different diets.. not a daily thing.. but every few weeks..

I agree, I would NOT want to wait 2 weeks with all that nausea and misery that she is in.. ugh.

Glad she has turned the corner, and will keep my fingers crossed she gets some sleep.

Clarissa said...

hoping you find something that works, the vomiting/nausea is not fun! praying!