Hello,
I have many questions.. but also perhaps with my questions some answers. My son was diagnosed at 10months old, he is now 4 years old. he is a duel Delta F508. His CF doctors insist he needs everything, every med known to man for the CF. He was on enzimes for 3 years until I did some research and elected to discontinue them (for now until I can learn more) for the time he was on them, he had nothing but difficulties, VERY greasy stools.. infact sometimes that is all that would come out, along with diareah and stomach aches. His doctors refused that this is even possible. After aproxamately 4-6 months I noticed a chance in his bowels.. he was not starting to have more normal stools, no more stomach aches and they were BROWN for the first time.. they sunk with no grease and were formed. Progressively they are still changing and are more often normal. his appitite also came back. I am not saying this is a good idea for anyone, just stating my observation in what I have done. I gave him pediasure often, and he was gaining weight and growing at a much faster pase than ever before. My son, has NEVER been symptomatic of CF. he was diagnosed by a process of elimination because he appeard at one time to have a circulitory problem in his feet. At this time it was noticed that he was also smaller than normal (my family gene has that in which I have many relitive just over the 4' mark, and at a young age were also under weight). There has never been any family history of CF or anyone with any sypmtoms to lead to, from either side. Much is still unknown to me about the effects, and understandings of what is going on. He was admitted into the hospital after catching what ever it was that my older son had come down with (nothing out of the norm in any family). I admitted him symply because he had CF and was complaining of symptoms of heart attack which concerned me. The first Chest xray indicated nothing, and I was origionally sent home. after two days, I called the CF doctor, and requested that he be admitted (knowing this group would have done it anyway I just wanted to prevent the long line in the emergency room) Later they did a CT scan and said he had pnomonia, but a very mild case. When they discovered I had stoped the enzimes, they went bolistic! the refused to believe that he had imporved, even after evidence from his pediatrition. They threatened to call social services on me and have him taken away if I did not agree to give him enzimes. I saw what it had done to my son, and I have reservations on re-introducing them to him. If ANYONE has any information or is aware of this happening to them or anyone they know.. or have access to any research please let me know. email me at ; amiablyme@yahoo.com Thank you!
