The change in our lives was most dramatic with our first child with CF, of course. He was diagnosed when he was 8 months old (after two months of complete bewilderment on the part of the doctors). He is a delF508 homozygote, as are all our children with CF. He was not even on the weight chart, had temporal wasting, presented with Pseudo-Bartter's Syndrome and a severe Vitamin K deficiency which left him with huge black bruises all over his torso. They initially thought he had leukemia. When they first admitted him to the hospital, his electrolyetes were so out of whack they did not understand why he was not in a coma. After he was put on enzymes, he got up to the 5th percentile for weight. We created a special food concoction which we would feed him by oral syringe every few hours, and with that we got him up to the 30th percentile. When he was diagnosed, he cultured Staph. He had virtually no saliva, so all his food had to be moistened for him. We were not satisfied with the vision of his future we were given by the CF Clinic. I began to study CF in a serious fashion, even though it required a lot of bootstrapping. One legacy of this is that you will continue to find the most recent abstract summaries from both the North American and European CF conferences on my listserv, the wlgroup2 (a yahoogroup) to this day. In the fall of 1998, it became clear to us that GSH was a very large part of the CF puzzle. GSH is one of the body's most important substances, acting in many roles and regulating many processes, including inflammation. You can read more about that on the UVICF's page on glutathione research. (http://members.tripod.com/uvicf/index.htm and then click on research, and then click on glutathione.) At the end of October 1998, we were ready to try glutathione with our first son with CF (the others hadn't been born yet!). We used a mix of one inhalation and several oral doses a day. We began to see changes within a few days--the first thing we noticed was that he now had saliva. He drooled for the first time in his life--what a beautiful sight! And then the weight gain started. He developed the appetite of a horse, and with each passing month his weight percentile got higher and higher. He is now at the 95th percentile for weight and according to our pediatrician, is now slightly overweight! His stools, which had alternated between constipating chalk-like feces and fatty stools, became almost normal. Most impressively, his need for enzymes decreased. At 10 years old, he takes 1 CREON 5 per meal. Yes, one enzyme of the smallest possible dose. We also noticed that instead of being chronically sick with a cold or flu, he now rarely became ill, and when he did, he got better faster than anyone else in the family. He stopped culturing Staph. He cultures nothing to this day. He has boundless energy and stamina, and is stronger than his older brother who does not have CF. Our other children with CF are doing just as well. One is at the 50th percentile for weight (he has my husband's build), and the other is at the 90th percentile for weight. None culture anything, and are equally healthy and strong. We thank God for GSH! GSH is not the only way we help our children, of course. Our kitchen looks like a health food store's supplement section. Even with the usual supplementation, levels of D, E, and K, are inadequate, so we use additional doses of these vitamins. We use DHA, MSM, alpha-lipoic acid, boron, calcium, magnesium, zinc, curcumin, NAC, Co Q-10, folic acid, acidophilus, and a few other things with our children on a daily basis. (We use a lot of the GSH-Curc Caps by Theranaturals; www.theranaturals.com) We use enzymes, of course, though a smaller dose than what would be considered usual, because their weight and stools are doing well on the smaller dose. They are routinely cultured, so we keep on top of their bacterial status. We keep up with the latest medical literature on CF so that when something promising comes along, we can jump on it for our children. CF is something different to us now than it was at our first son's diagnosis. We used to think of CF as something that would kill them, probably in their mid 20's. We now think of CF more on the lines of diabetes: it is a chronic condition about which one must be exceedingly vigilant. But with due vigilance and prudence, we fully expect them to live a normal and reasonably healthy lifespan. Our lives have indeed changed dramatically--and for the better--since that fateful day almost 8 and 1/2 years ago when our first son with CF took his first dose of GSH!
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