Guest guest Posted February 9, 2001 Report Share Posted February 9, 2001 ok- we have been on the diet for a little over 6 months now. I don't think we have seen anything earth shattering. She had the peptide test 6 months ago and came out over 100 for casein and 59.5 for gluten peptide. My daughter had dark circles under her eyes, which she still does, although they are lighter now. She is potty trained now ( but we were working on that in ABA). 4 weeks into the diet she did a little verbal imitation- which is more than we ever had before, but it has not increased any from that point. She was sleeping through the night. but we started bethanecol on the Megson protocol last month and she has not been sleeping as well now. We never had loose stools until we wwent on the diet/cod liver oil. After starting the bethanecol the stools are now formed. Her diet is still limited, she won't try new things, albeit now her diet is limited to a few gfcf items. So, I don't know what is from ABA, diet, cod liver oil, or just coincidence. Should I give her a piece of bread and see if anything happens? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2001 Report Share Posted February 9, 2001 That is a tough choice you have in front of you. To challenge the diet or live with the " ignorance is bliss " philosophy. Like you I am doing the diet. So much so, I intimately know every nook and cranny of my kitchen. I have not seen a movie (on TV or otherwise) in over six months. Monthly manicures have been gone for a year and a half now (since the diagnosis,) and time used to be spent sleeping is now spent with my obsession with the perfect gluten free / casein free recipes that my son will actually eat and get nutrition from! (OK and reading medical abstracts, but that is not the point of this email!) Believe me, I am not making light of the situation here. I rather am commending you for six months hard work. I feel for me, that Jeff's success is a myriad of therapies, supplements and of course the diet. And yes, a huge daily helping of love and kisses. A year ago Jeff was mute. Jeff had terrible bowels and basically was hard to control in any shape of the word. My family was lost to. Lost in what can we do to help this little guy. Today... we have a different boy. He is beginning to talk. His gut appears to be healing by the fabulously shaped poops in his diaper. He goes for walks with me holding my hand. I like the new Jeff. Do I want to know if the diet is working? Yes. Do I want to challenge it. Personally? No. I am thrilled with where we are and the prospects of where we are going that I am not willing to jeopardize it right now. We have much more work to do. Will I challenge the diet when he is older? YES. I will do that by giving him a small meal featuring a small tiny amount of gluten OR casein. And then watching him carefully. For now I believe what we are doing is working and my ignorance on what makes him feel better and do better is BLISS. Good luck on your decision. Because it is your decision. And the nice folks on the board, including me, will be supporting you all the way. A Jeffs mom 6 month diet trial ok- we have been on the diet for a little over 6 months now. I don't think we have seen anything earth shattering. She had the peptide test 6 months ago and came out over 100 for casein and 59.5 for gluten peptide. My daughter had dark circles under her eyes, which she still does, although they are lighter now. She is potty trained now ( but we were working on that in ABA). 4 weeks into the diet she did a little verbal imitation- which is more than we ever had before, but it has not increased any from that point. She was sleeping through the night. but we started bethanecol on the Megson protocol last month and she has not been sleeping as well now. We never had loose stools until we wwent on the diet/cod liver oil. After starting the bethanecol the stools are now formed. Her diet is still limited, she won't try new things, albeit now her diet is limited to a few gfcf items. So, I don't know what is from ABA, diet, cod liver oil, or just coincidence. Should I give her a piece of bread and see if anything happens? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2001 Report Share Posted February 11, 2001 If you decide to do a challenge, please read my post #57588 from just a couple of days ago. It tells specifically one recommended way to do a challenge. Just giving a piece of bread isn't usually the best way to go. Quote Link to comment Share on other sites More sharing options...
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