Guest guest Posted March 28, 2004 Report Share Posted March 28, 2004 In a message dated 3/26/04 10:18:35 AM Pacific Standard Time, Mito writes: The biggest frustration I have is that many of you have doctors that assume keeping the kids hydrated is important Hydration is like the MOST important thing in MITO. All the literature says this: mito kids "MUST NOT be ALLOWED to become dehydrated", and "must not be allowed to get into a starvation state" and "must not be allowed to become over exerted" (as in aerobic exercise) and must be protected from any kind of fever or infection. This is a direct quotation from the MDA pamphlet on mitochondrial disease from like 10 years ago till as recently as 5 years ago. I remember copying these pamphlets ad nauseum for all of my daughters teachers, sitters, etc. Our rule has always been hydration first, then calories and rest. There are so many toxic byproducts floating around in a MITO kid's bloodstream because they can't recycle and use them as normal people can, that the kidneys are the only way they have to detox and need hydration to do this far more than the average person. You should SEE the junk your kid puts out in his/her urine! Oh and we discovered (for us, it might not be the same with y'all) that cough syrups make my daughter WORSE not better, as when she has a cold/fever she has much decreased muscle tone and more difficulty coughing up the secretions she already has from the illness. Cough syrups INCREASE the volume of crap they have to cough up (by decreasing its viscosity) and she literally DROWNS in her secretions this way. I've had to call 911 and have her resusitated several times after giving her ordinary cough syrup so that I don't do that any more no matter how congested she sounds. I give her nebs for sure and percussion and drainage every couple of hours (if you don't know how, get an RT to teach you it could save your child's life). kj mom to De-Arbra age 16 complex III (+2 others I forget cos they were less important to the doc) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 No, you're right too.....the fact is that timing can be important. Also, some do not need as much. It's just like at bedtime, I'm always thirsty. But if I want a full night's sleep must resist. It is so much more complicated than the old rules we were taught. > > > > > > > > > > > > Hi, > > > > > > I'm not certain at all why that happens but what you describe > > has > > > > been > > > > > happening to me since prior to my diagnosis. It's almost like a > > > small > > > > > involuntary gasp. Is that what you mean? Unfortunately I can't > > tell > > > > you > > > > > anything about what it is and why it happens. No one has ever > been > > > > able > > > > > to tell me. > > > > > > But you're not alone. Maybe someone else will know. Bruce??? > > > > > > > > > > > > Beth > > > > > > Moderator > > > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > > > > From: vella_vesture bpello@ > > > > > > To: Breathe-Support@ yahoogroups. com > > > > > > Sent: Thursday, March 26, 2009 6:07:01 PM > > > > > > Subject: Shortness of Breath > > > > > > > > > > > > > > > > > > I was diagnosed with polymyalgia rheumatica in 1997. At the > > onset > > > I > > > > > noticed I had shortness of breath upon lifting heavy objects and > > > > > sweeping floor. It comes and goes and I even have good times > when > > I > > > > can > > > > > walk a tred mill. I have not tested positive for RA but did have > > > lung > > > > > studies and have been diagnosed with pulmonay fibrosis. I am now > > > > > experiencing something strange which can't get a satisfactory > > answer > > > > > for. At rest I suddenly have a spasm of my diaphragm with causes > > me > > > to > > > > > take a sudden rapid deep breath. I have no control over this and > > it > > > is > > > > > getting painful. Any ideas of what is happening. Thanks > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 No, you're right too.....the fact is that timing can be important. Also, some do not need as much. It's just like at bedtime, I'm always thirsty. But if I want a full night's sleep must resist. It is so much more complicated than the old rules we were taught. > > > > > > > > > > > > Hi, > > > > > > I'm not certain at all why that happens but what you describe > > has > > > > been > > > > > happening to me since prior to my diagnosis. It's almost like a > > > small > > > > > involuntary gasp. Is that what you mean? Unfortunately I can't > > tell > > > > you > > > > > anything about what it is and why it happens. No one has ever > been > > > > able > > > > > to tell me. > > > > > > But you're not alone. Maybe someone else will know. Bruce??? > > > > > > > > > > > > Beth > > > > > > Moderator > > > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > > > > From: vella_vesture bpello@ > > > > > > To: Breathe-Support@ yahoogroups. com > > > > > > Sent: Thursday, March 26, 2009 6:07:01 PM > > > > > > Subject: Shortness of Breath > > > > > > > > > > > > > > > > > > I was diagnosed with polymyalgia rheumatica in 1997. At the > > onset > > > I > > > > > noticed I had shortness of breath upon lifting heavy objects and > > > > > sweeping floor. It comes and goes and I even have good times > when > > I > > > > can > > > > > walk a tred mill. I have not tested positive for RA but did have > > > lung > > > > > studies and have been diagnosed with pulmonay fibrosis. I am now > > > > > experiencing something strange which can't get a satisfactory > > answer > > > > > for. At rest I suddenly have a spasm of my diaphragm with causes > > me > > > to > > > > > take a sudden rapid deep breath. I have no control over this and > > it > > > is > > > > > getting painful. Any ideas of what is happening. Thanks > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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