Guest guest Posted September 21, 2007 Report Share Posted September 21, 2007 10 doesn't seem that old to me actually, though I feel exactly the way you do when I consider lost opportunity. It seems like the hardest puzzle I've ever encountered. Thanks for the update on the show. Last week I heard that a 5 year old we know who had severe OCD has suddenly " matured " out of it. While I'm happy for the family who btw is very health conscious, I wish my life had been so easy. It makes me very hopeful though that young bodies may in fact be able to get a leg up on whatever is dragging them down (infection or deficiency). I'm currently in the trenches with two who have been " touched " , and they certainly missed the " window " being ages 14 and 11 at this time. We did flagyl, not diflucan, in one child, glutathione IV, and we do mb12 with other b vitamins and ,minerals, fatty acids along with diet and environmental awareness. We do homeschool which is currently taking much of my time. They have improved, and are fairly functional but it is not an easy life for middle schoolers who are not in robust health. I'm sure that infections are a part of it, and I naively perhaps am waiting for them to lick some of these infections. In the mean time, the expectations that society piles on them, march forward. It seems like stress management is a big issue. And deep breathing, if I could somehow get them to do this somehow. I'd especially love to hear from other mothers with older ASD youth, as I'm sure there is a learning curve as far as teaching them to cope with their limitations, and the cultivating of a belief in the possibility that they could recover even more in the future. I do believe that there is a larger window of opportunity than the experts. I suspect that it is stress that gets in the way for the most part. Meanwhile, I seem to bear some of the stress for them, which isn't really a good long term situation. Oh well. It certainly is a struggle! Kate > > Ok..so who watched Oprah yesterday? > > Any thoughts...opinions? > > I'll start....I thought it was fabulous, I laughed, cried and felt > great that these ladies represented us so well, go the message out so > that it was clear. I pray that parents who don't do any biomedical > will now look into it with passion. > > I am depressed by the " window of opportunity " that is discussed in her > book. I understand it and probably agree with is but since I have a > 10 year old, it still sucks and hurts. > > I also have feelings of jealousy which I know are not healthy. I feel > bad that I have them, but to nearly recover your child on diet, MB12 > and diflucan, that's the jackpot. But I have to say those have been > some of our best interventions as well and my son could have been one > of those recovered ones IF we would have caught him during the " window " . > > I just thought it would be good to have an honest...mom to mom > discussion about all of this. I'm sure it brought up feelings in all > of us that are bittersweet. > > What and Holly did was fabulous and it was a great day for the > autism community. It's a good time to look and analzye... " where would > my kid be now, if we hadn't found biomed? " > > Keeping this on the " multiple-infection " theme, did anyone else think > about how 's son had such massive seizures...had to have an > infection base for that, why else would he get those? > > Does anyone have any thoughts....what feelings did this show stir up in > you? > > Tami > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 Yes show was fabulous. But it did stir up jealousy. On many levels. Jealous these parents who get instant WOW's, instant recoveries within a year to two years time. Jealous I don't have the money to do whatever I want whenever I want for my child. Jealous I can tell a mom to be proactive and at least get the kid on the diet but it's not until JENNY says it that I get a flood of emails of parents wanting to start the diet. Jealous she's got the body to leave one husband in the midst of autism and easily fall into the hands of another who is rich and famous with ease (okay she's got the mind too but come on the body has loads to do with it!) And that's just the start of the jealousy issues. Tami window of opportunity is bogus as I said to you PM before. Hopefully it stirs up parents to action but it should not discourage anyone. Multiple Infection I saw with Holly Peete whose dad died of MS right? He was on Sesame Street...forgot the name? She now has a bit of a lisp or downward in the face on one side...kind of like how bells palsy effects many including my own mom. The multiple seizure issue definitely an indication of multiple infections...be it viral HHV6 one big one (which is why Dr Goldberg puts many on valtrex as do other mainstream DAN practitioners) or bacteria and yeast?? Kristie -- In MultipleInfectionsAndAutism , " tamiduncan2003 " wrote: > > Ok..so who watched Oprah yesterday? > > Any thoughts...opinions? > > I'll start....I thought it was fabulous, I laughed, cried and felt > great that these ladies represented us so well, go the message out so > that it was clear. I pray that parents who don't do any biomedical > will now look into it with passion. > > I am depressed by the " window of opportunity " that is discussed in her > book. I understand it and probably agree with is but since I have a > 10 year old, it still sucks and hurts. > > I also have feelings of jealousy which I know are not healthy. I feel > bad that I have them, but to nearly recover your child on diet, MB12 > and diflucan, that's the jackpot. But I have to say those have been > some of our best interventions as well and my son could have been one > of those recovered ones IF we would have caught him during the " window " . > > I just thought it would be good to have an honest...mom to mom > discussion about all of this. I'm sure it brought up feelings in all > of us that are bittersweet. > > What and Holly did was fabulous and it was a great day for the > autism community. It's a good time to look and analzye... " where would > my kid be now, if we hadn't found biomed? " > > Keeping this on the " multiple-infection " theme, did anyone else think > about how 's son had such massive seizures...had to have an > infection base for that, why else would he get those? > > Does anyone have any thoughts....what feelings did this show stir up in > you? > > Tami > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Hi! I've never posted on this list but I know most of you from other lists. I think 's son might be recovered on the surface but he is still on the diet so the root of the problem has not been addressed. I'm not criticizing , I'm just saying that that his porphyrin results are probably still very high so the band-aid (GFCF, diflucan) is working well but it's still a band-aid. I think that's why he still has " boo-boos " as she called them. Lots of kids respond to the band-aid and lots don't (even if they start right away like my son). That's why I think we desperately need way way more research into biomed and new treatments. I feel the pace of this is too slow. If some children can recover even with a bandaid then it means all kids can recover if they got the right treatment. I don't believe in a window personally. Why do you think that the seizures are related to infections? Would they not have been caused by the vaccines? I'm just trying to understand this. Hope > > Ok..so who watched Oprah yesterday? > > Any thoughts...opinions? > > I'll start....I thought it was fabulous, I laughed, cried and felt > great that these ladies represented us so well, go the message out so > that it was clear. I pray that parents who don't do any biomedical > will now look into it with passion. > > I am depressed by the " window of opportunity " that is discussed in her > book. I understand it and probably agree with is but since I have a > 10 year old, it still sucks and hurts. > > I also have feelings of jealousy which I know are not healthy. I feel > bad that I have them, but to nearly recover your child on diet, MB12 > and diflucan, that's the jackpot. But I have to say those have been > some of our best interventions as well and my son could have been one > of those recovered ones IF we would have caught him during the " window " . > > I just thought it would be good to have an honest...mom to mom > discussion about all of this. I'm sure it brought up feelings in all > of us that are bittersweet. > > What and Holly did was fabulous and it was a great day for the > autism community. It's a good time to look and analzye... " where would > my kid be now, if we hadn't found biomed? " > > Keeping this on the " multiple-infection " theme, did anyone else think > about how 's son had such massive seizures...had to have an > infection base for that, why else would he get those? > > Does anyone have any thoughts....what feelings did this show stir up in > you? > > Tami > Quote Link to comment Share on other sites More sharing options...
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