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HERWriter (reply to Anonymous)


I'm not one to beat around the bush, but even in doing the research for this article, it was very frightening. One of the things that makes it so frightening is it presents clinically like pneumonia and it's only when pneumonia meds don't work that the doctors look for something else and by then this condition has already taken a significant toll on the body.

Sounds like they've done the CT scans, biopsy and lung function tests which are all needed to confirm what is actually happening to the tissues and airways.

I would make sure that you have a respirologist (someone who specializes in respiratory ailments) present or at least assure yourself that the doctors currently treating your daughter have experience or knowledge in this area. Specialists have a much deeper understanding of some of these things than a general practitioner. Perhaps they can work in conjunction with the treating physician and may be able to suggest a method of treatment that may not have been tried.

As my article states, treatment at this point is focusing on keeping the lungs functioning so the antibiotics can deal with the infection. Still 75% is not bad. It's worse than yesterday, but still not bad.

Unfortunately, my research did not turn up any information on the right amount pressure to be used on the ventilator in this case (sometimes in younger children and infants the pressure needs to be adjusted because they have smaller lungs). You may want to investigate that. And how much oxygen she's getting. If the decrease has happened while at the same pressure and amount of oxygen, then it is likely that scarred tissue is starting to form. Nothing you can really do about that except hope that the treatment will prevent too much of it.

But, then again, I'm only going by what I learned through my research. I'm not a medical professional.

My article on the lymphatic system will explain why her lymphnodes are inflamed, but briefly, they are inflamed because they're battling what's affecting her lungs. It is actually a good thing. It is important to keep the lymphatic fluid flowing, though, and not let it sit stagnant. Lymphatic fluid flows with the movement of the body. If she is just lying there, the fluid isn't moving. Use massages especially along the torso and up around under her right clavicle where the lymphatic fluid joins with the circulation system. Start with her feet and work your way up. Exercise her legs and arms as well. This will keep the lymphatic fluid moving, but also keep her muscles from atrophying while she's lying there.

Western medicine doesn't really pay a whole lot of attention to the lymphatic system, but my research on that side revealed to me how important it is and that we need to help that system do it's job.

I know it seems like you're in a waiting game and holding pattern. And this disease is very scary. I hope some of the resources here at empowher.com have been helpful.

Please keep us posted on your daughter's condition.


September 23, 2010 - 7:52am


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