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Posts by MotherWhimsey

And we picked the zippy zone. It'll have a custom back, custom seat, thigh belts and butterfly harness instead of lap belt (anything around his middle hurts his guts and messes with a few of his tubes), custom head rest (without a "vlad the impaler" bar, woot!), a tank holder (didn't know they could put these on manual chairs with big wheels), 22 inch wheels with 6 degrees of camber so he can't rock it over, light up flashing caster wheels, and the paint is called toxic...
Our insurance pays for CytoQ. It's billed as a medical food and not a medicine and it's the only brand of CoQ10 that is formulated specifically for Mitchondrial Cytopathy. So as long as you have a Mito diagnosis, they will cover it. I don't know about if you have a suspected or probable dx.
My DS has. They've always been in the OR and sedated. Really a very easy scope for us. good luck!
I'm sorry it didn't work.
here's a black one Prevacid can cause them to turn black like that. Some meds cause them to turn other colors.
We have a GJ now so we can't do it ourselves, but we used to have a just plain g-tube. We replaced it at home after the first placement. It's really not as hard as it seems. You just lube it up and shove it in. We would aim for 3 months but if it was in good shape we'd keep it in longer. Likewise, if it wasn't working right or the balloon burst before the 3 month mark, we'd change it. Ours would sometimes come out all black too. My kid freaked a little at first, but...
tell them to bill medicaid as a secondary insurance. It's not that uncommon. We don't have it anymore, but when Linden was under a year we had both for a while and never had a problem at all. They just asked which was primary and which was secondary.
s We'll be down there this weekend through monday or tuesday, so if you need anything brought to you or anything, just let me know.
Quote: Originally Posted by DoratheExplora Yes. Going to try to get the insurance to cover. Is BiPap a cgm? Okay, I get it now I think. No, BiPap isn't a glucose monitor, it's mechanical ventilation via a mask. It's just not approved for under 40 lbs. I just prefer the unapproved method of ventilation over a trach and vent if we can avoid it. So it's approved over 40 lbs, just not under but it's used under often.
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