Sofia had her Cat scan in February - it was done as part of Dr,. X's study - the study, apparently, is to see whether they can follow CF children with a low dose Cat scan instead of x-rays and therefore have a better view of the lungs and what really is going on that x-rays don't show. They have developed a cat scan that is about the radiation dose of less than one x-ray. Anyway, Dr. X was there along with his study partner (don't know his name, but is supposed to be foremost expert in reading cat scans in country.) Afterwards, Dr. X went over the cat scan with Sofia's father and me - showed us that there was nothing going on in her lungs except a little bit of mucus in one upper area and one spot in her longs that either was prior injury or was pre-asthmatic changes, but nothing in her lungs that was CFy. This is after a cat scan a year ago showed "significant mucus, one area of dead tissue and extreme narrowing of her small airways" He indicated that her lungs were perfectly normal - that she had better lung function that he did and better PFTs that he did, as well as did Dr. Y (the clinic doctor that follows Sofia) - he said the same thing and then when we had our regular clinic visit afterwards, he indicated that there was nothing else he could recommend in view of the current status of her lung function, except that now he would be amenable to weaning her off of the inhaled steroid he likes to use on CFers. So now she's down to one puff once a day and when she goes back in May, he will probably take her off if she is still doing so well. In the written clinic report, he actually said there was "significant improvement in her lungs" and that she has normal small airway function and that her PFTs were excellent (couldn't believe he actually put that in writing) The magic has been two things (l) the natural DNA drops we are using because we refused to use D'Nase on her like they wanted us to. Before Sofia started the drops, she could only blow 50-75 on a home peak flow meter - within two weeks, she was blowing 250 and now normally blows between 220 and 260 on a daily basis. These drops work like D'Nase (otherwise called Pulmozime) in breaking down the mucus but without any side effects whatsoever since it is a natural product. It also reduced the inflammation in the small airways The other magic thing is inhaled glutathione. Sofia has been doing both the drops and the inhaled glutathione for about a year now and we purposely strung out the last cat scan because we told the clinic doctor that we wanted an opportunity to see whether these things were going to make a difference. Of course they will never admit that it is those things that made the difference, but who cares - they did and Sofia is perfectly healthy in her lung function which had been going the other way as you remember. Since our alternative guy has done some research in his office, he has learned that the inhaled glutathione raises the blood levels of glutathione also - that is something that was not known before. We are now waiting to see whether or not it has had an effect on Sofia's liver problems. Dr. Z at Children's Gastro was seeing her on a yearly basis and we had stablized it using natural methods. She has been on leave and will be back soon, so we opted to wait for her to have the follow up - Hope that also has improved.
on April 23, 2007, 8:03 am
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