We had Abbey's cocktail compounded at Village Green (fomerly 'The Apothecary' in Bethesda, MD)before we moved to the UK. Abbey took CoQ10, Riboflavin, Lipoic...
When Gaby was younger we used an inflatable ring around her waist in the pool. Then we graduated her to using arm floats on the pool. She has good head control...
I'm so glad. that makes my day to know I was part of being able to help our kids be more kids. :) jenna ... to ... works! ... was ... these ... stay ... that ...
would love to see pics with a kid in it- can't find any on internet...we also thought the Jazz looked less medical than a zippie wheelchair. since you have...
I am sending a link to a company that is going to donate 10% of all sales of
a particular sandal called the McKim sandal to MitoAction. If you are
interested...
I'm looking for some tips and maybe just reassurance that the BiPap that was just delievered today is safe for my daughter. Anna had a sleep study done and it...
Shoffner reviewed some of Natalie's stuff and wants a test done when we get to Atlanta at a different location before we see him. Unfortunatley I didn't catch...
In a message dated 6/1/2007 5:43:23 PM Eastern Daylight Time, KAFFNEY95 writes: Mikey's (age 3) setting i think is 5...I don't even know for sure because he...
Melody: I've been following Natalie-just limited time, you know the drill, but TAKE losta notes about what's done, questions answers if possible. We are steps...
A number of children with mitochondrial disease (and other neuromuscular diseases) use BiPAP successfully. The inspiratory pressure setting for your daughter...
When Jamieson started on the bi-pap he did not sleep for two nights straight. The mask made him clostrophobic and her was terrified. We then switched to ...
Thank you, I did look up the nasal pillow and it does look way more comfortable/tolerable. I'm wondering about the pressures, though? The machine when turned...
Hi and thank you! I did look at the nasal pillow, it looks alot better. I'm still concerned about the rates. Her machine when turned on shows the number 4,...
Hi, Our son Collin started bi-pap at age ten, so he was able to process the emotions of it and talk it out during the day, but the first couple of nights were...
Forgot to mention this is for the month of June. The store owners wife has
mito.  Wendy - Hali (6) - Zoe (5) - Colby (35 months) unspecified mito - Lily ( 1...
My son Zach has had BiPAP since February. The machines are all different but I do think you should have a way to verify the setting are correct. If the...
When Will started on BiPap they had us start at 8 inspiration and 4 expiration (makes it easier to blow air out, but not enough for the airways to collapse)...
What brand of unit did your DME supply? There is a way to check the settings on each unit, but the controls are placed in differing locations. Not all...
Its the Resting Metabolic Rate test.... Ainsley had it done.. Nat will just sit in a chair with an "astronaut" (for lack of abetter term) helmet on her head...
Kathy, Usually bi-pap has two settings, for example, Jamieson's is 6 / 8. On the machine that he has, we use the ramp feature which slowly gets him up to the ...
Hi again, The model is a respironics auto bipap, m series. I'm going to call the therapist and ask for the manual. She did leave a cd, and I thought that was...
Kathy, Our machine is a respironics as well but I don't know the model without checking it and it is with Jamie at the hospital. Sorry. I do know that it gives...
I'm sorry to hear Jamie is in the hospital. I've not been able to get to know many on this board, but will pray that he will be home soon. Thank you again. ...
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