Guest guest Posted September 30, 2006 Report Share Posted September 30, 2006 I am soooooooooooooo happy for you, D., re: Luke's progress!!! I just want to read and read all of these testimonies! I am so happy for all of you and can imagine the glee and amazement at hearing your child say words after all these months and years of none or few. I started Treyvon on ProEfa yesterday (squirting a fair amount of oil on myself and utensils trying to open them in order to mix them in. Any advice for tricks of how to get as much oil out and into his juice or whatever I mix it with, as possible would be great.) I am fighting the urge to try the E and ProEpa right away because I'm hoping to be able to figure out which think is working, or eventually what combos work best. It almost feels surreal, hearing these stories and imagining my grandson actually talking to me. I can only begin to imagine what his relief would be!! Thank you to all of you for sharing your experiences and details of what you're using. Karyn > > my son luke is 25 months. not very active. usually scared to > death of new people, loud > > sounds, slides, people getting too close, absolutely no words > just " ba " and just one " ba " at > > a time to refer to everything. he's been on pro EFA for two weeks > and vitamin E for almost > > 1 week. > > > > today we are in the car and i told him we were going to the park > to play baseball. we get > > to the park and he says " ba ba! " very purposefully, sounding > like " baseball " . so we get out > > and he's swinging at that baseball hitting it all over the grass > for at least 15 minutes. > > > > then we get to the playground and he's making all sorts of new > sounds like " RARA MABA > > weh weh wa " and when i ask him what color something was he > says " REH! " it was red. > > > > i was at the top of the slide and asked him if he wanted to get on > my lap but he pushed > > my back so i went down. then he went down by himself! he has > always hated slides. > > > > then a girl about 8 years old comes over and starts hugging him > and wanting to play with > > him. he liked it! and she was really in his face and being quite > loud but wonderful with > > him. he was having fun and laughing. then she tries to pick him > up and he's still holding > > my hand, she says " let go! " and i realize, yes i should let him > have fun! i am always > > sheltering the boy because of his fears. so off they run and he's > laughing and they're > > having a great time. we play baseball with her brother until he > finally gets overstimulated > > after an hour and a half of good exercise and loud play. i can't > believe this is my boy. i > > think it's the vitamin E. it seems like it's given him the energy > or ability to join in without > > fear and it's great! i have heard of vit E making kids hyper but > it seems this is just what > > mine needed. when i run out of the bottle i will wait a couple > days on it and see what > > changes happen. it could just be the time in his life to get over > the shyness but i doubt it. > > it's too coincidental. sorry for the long story i'm just so happy > and thankful to you all > > about the things i have learned being part of this group. next > we're doing proEPA > > magnesium and zinc. not all at once! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 From everything I've learned so far, I suspect you DO really need both omega 3 and vit E. Both are likely deficient in the kids who respond. If it is mainly a vit E problem, omega 3 supplements are still likely needed since low vit E causes destruction/oxidation of the omega 3 fatty acids. So without sufficient E - you will not see the maximum benefit of omega 3, because much of it will still be destroyed. I don't think its " one or the other " . I think its both, and they are linked. No harm in giving them together, and no harm in faster progress either. Why wait 2 months to see progress you might see in 2-3 weeks if you give them together? Just my own thoughts. - > I am soooooooooooooo happy for you, D., re: Luke's progress!!! I just want > to read and read all of these testimonies! I am so happy for all of you and > can imagine the glee and amazement at hearing your child say words after all > these months and years of none or few. > I started Treyvon on ProEfa yesterday (squirting a fair amount of oil on > myself and utensils trying to open them in order to mix them in. Any advice > for tricks of how to get as much oil out and into his juice or whatever I > mix it with, as possible would be great.) I am fighting the urge to try the E > and ProEpa right away because I'm hoping to be able to figure out which think > is working, or eventually what combos work best. It almost feels surreal, > hearing these stories and imagining my grandson actually talking to me. I can > only begin to imagine what his relief would be!! > Thank you to all of you for sharing your experiences and details of what > you're using. > Karyn > > > > my son luke is 25 months. not very active. usually scared to > > death of new people, loud > > > sounds, slides, people getting too close, absolutely no words > > just " ba " and just one " ba " at > > > a time to refer to everything. he's been on pro EFA for two weeks > > and vitamin E for almost > > > 1 week. > > > > > > today we are in the car and i told him we were going to the park > > to play baseball. we get > > > to the park and he says " ba ba! " very purposefully, sounding > > like " baseball " . so we get out > > > and he's swinging at that baseball hitting it all over the grass > > for at least 15 minutes. > > > > > > then we get to the playground and he's making all sorts of new > > sounds like " RARA MABA > > > weh weh wa " and when i ask him what color something was he > > says " REH! " it was red. > > > > > > i was at the top of the slide and asked him if he wanted to get on > > my lap but he pushed > > > my back so i went down. then he went down by himself! he has > > always hated slides. > > > > > > then a girl about 8 years old comes over and starts hugging him > > and wanting to play with > > > him. he liked it! and she was really in his face and being quite > > loud but wonderful with > > > him. he was having fun and laughing. then she tries to pick him > > up and he's still holding > > > my hand, she says " let go! " and i realize, yes i should let him > > have fun! i am always > > > sheltering the boy because of his fears. so off they run and he's > > laughing and they're > > > having a great time. we play baseball with her brother until he > > finally gets overstimulated > > > after an hour and a half of good exercise and loud play. i can't > > believe this is my boy. i > > > think it's the vitamin E. it seems like it's given him the energy > > or ability to join in without > > > fear and it's great! i have heard of vit E making kids hyper but > > it seems this is just what > > > mine needed. when i run out of the bottle i will wait a couple > > days on it and see what > > > changes happen. it could just be the time in his life to get over > > the shyness but i doubt it. > > > it's too coincidental. sorry for the long story i'm just so happy > > and thankful to you all > > > about the things i have learned being part of this group. next > > we're doing proEPA > > > magnesium and zinc. not all at once! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 > > > > Why would you stop it when you are seeing benefits? The thing that > > really bothers me is to think of all our our kids who are responding > > to vitamin E... that a brain starved of vitamin E can suffer > > irreversible damage over time. If this is truly the case for our > > kids, the sooner the deficiency is treated the better for hopes of > > greatest recovery potential. I wouldn't stop it if I were you. Just > > enjoy the improvement! It is really sad to watch your child > > regress, but I also worry about what that is doing to their little > > brains. Although I am having a heck of a time finding any MDs who > > know anything about this...I suspect at some point when this process > > if finally investigated that we will realize that these children > > have a serious but treatable medical condition. > > > > Glad you are seeing good things! -claudia > > > > > my son luke is 25 months. not very active. usually scared to > > death of new people, loud > > > sounds, slides, people getting too close, absolutely no words > > just " ba " and just one " ba " at > > > a time to refer to everything. he's been on pro EFA for two weeks > > and vitamin E for almost > > > 1 week. > > > > > > today we are in the car and i told him we were going to the park > > to play baseball. we get > > > to the park and he says " ba ba! " very purposefully, sounding > > like " baseball " . so we get out > > > and he's swinging at that baseball hitting it all over the grass > > for at least 15 minutes. > > > > > > then we get to the playground and he's making all sorts of new > > sounds like " RARA MABA > > > weh weh wa " and when i ask him what color something was he > > says " REH! " it was red. > > > > > > i was at the top of the slide and asked him if he wanted to get on > > my lap but he pushed > > > my back so i went down. then he went down by himself! he has > > always hated slides. > > > > > > then a girl about 8 years old comes over and starts hugging him > > and wanting to play with > > > him. he liked it! and she was really in his face and being quite > > loud but wonderful with > > > him. he was having fun and laughing. then she tries to pick him > > up and he's still holding > > > my hand, she says " let go! " and i realize, yes i should let him > > have fun! i am always > > > sheltering the boy because of his fears. so off they run and he's > > laughing and they're > > > having a great time. we play baseball with her brother until he > > finally gets overstimulated > > > after an hour and a half of good exercise and loud play. i can't > > believe this is my boy. i > > > think it's the vitamin E. it seems like it's given him the energy > > or ability to join in without > > > fear and it's great! i have heard of vit E making kids hyper but > > it seems this is just what > > > mine needed. when i run out of the bottle i will wait a couple > > days on it and see what > > > changes happen. it could just be the time in his life to get over > > the shyness but i doubt it. > > > it's too coincidental. sorry for the long story i'm just so happy > > and thankful to you all > > > about the things i have learned being part of this group. next > > we're doing proEPA > > > magnesium and zinc. not all at once! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 From everything I've learned so far, I suspect you DO really need both omega 3 and vit E. Both are likely deficient in the kids who respond. If it is mainly a vit E problem, omega 3 supplements are still likely needed since low vit E causes destruction/oxidation of the omega 3 fatty acids. So without sufficient E - you will not see the maximum benefit of omega 3, because much of it will still be destroyed. I don't think its " one or the other " . I think its both, and they are linked. No harm in giving them together, and no harm in faster progress either. Why wait 2 months to see progress you might see in 2-3 weeks if you give them together? Just my own thoughts. - > I am soooooooooooooo happy for you, D., re: Luke's progress!!! I just want > to read and read all of these testimonies! I am so happy for all of you and > can imagine the glee and amazement at hearing your child say words after all > these months and years of none or few. > I started Treyvon on ProEfa yesterday (squirting a fair amount of oil on > myself and utensils trying to open them in order to mix them in. Any advice > for tricks of how to get as much oil out and into his juice or whatever I > mix it with, as possible would be great.) I am fighting the urge to try the E > and ProEpa right away because I'm hoping to be able to figure out which think > is working, or eventually what combos work best. It almost feels surreal, > hearing these stories and imagining my grandson actually talking to me. I can > only begin to imagine what his relief would be!! > Thank you to all of you for sharing your experiences and details of what > you're using. > Karyn > > > > my son luke is 25 months. not very active. usually scared to > > death of new people, loud > > > sounds, slides, people getting too close, absolutely no words > > just " ba " and just one " ba " at > > > a time to refer to everything. he's been on pro EFA for two weeks > > and vitamin E for almost > > > 1 week. > > > > > > today we are in the car and i told him we were going to the park > > to play baseball. we get > > > to the park and he says " ba ba! " very purposefully, sounding > > like " baseball " . so we get out > > > and he's swinging at that baseball hitting it all over the grass > > for at least 15 minutes. > > > > > > then we get to the playground and he's making all sorts of new > > sounds like " RARA MABA > > > weh weh wa " and when i ask him what color something was he > > says " REH! " it was red. > > > > > > i was at the top of the slide and asked him if he wanted to get on > > my lap but he pushed > > > my back so i went down. then he went down by himself! he has > > always hated slides. > > > > > > then a girl about 8 years old comes over and starts hugging him > > and wanting to play with > > > him. he liked it! and she was really in his face and being quite > > loud but wonderful with > > > him. he was having fun and laughing. then she tries to pick him > > up and he's still holding > > > my hand, she says " let go! " and i realize, yes i should let him > > have fun! i am always > > > sheltering the boy because of his fears. so off they run and he's > > laughing and they're > > > having a great time. we play baseball with her brother until he > > finally gets overstimulated > > > after an hour and a half of good exercise and loud play. i can't > > believe this is my boy. i > > > think it's the vitamin E. it seems like it's given him the energy > > or ability to join in without > > > fear and it's great! i have heard of vit E making kids hyper but > > it seems this is just what > > > mine needed. when i run out of the bottle i will wait a couple > > days on it and see what > > > changes happen. it could just be the time in his life to get over > > the shyness but i doubt it. > > > it's too coincidental. sorry for the long story i'm just so happy > > and thankful to you all > > > about the things i have learned being part of this group. next > > we're doing proEPA > > > magnesium and zinc. not all at once! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 > > > > Why would you stop it when you are seeing benefits? The thing that > > really bothers me is to think of all our our kids who are responding > > to vitamin E... that a brain starved of vitamin E can suffer > > irreversible damage over time. If this is truly the case for our > > kids, the sooner the deficiency is treated the better for hopes of > > greatest recovery potential. I wouldn't stop it if I were you. Just > > enjoy the improvement! It is really sad to watch your child > > regress, but I also worry about what that is doing to their little > > brains. Although I am having a heck of a time finding any MDs who > > know anything about this...I suspect at some point when this process > > if finally investigated that we will realize that these children > > have a serious but treatable medical condition. > > > > Glad you are seeing good things! -claudia > > > > > my son luke is 25 months. not very active. usually scared to > > death of new people, loud > > > sounds, slides, people getting too close, absolutely no words > > just " ba " and just one " ba " at > > > a time to refer to everything. he's been on pro EFA for two weeks > > and vitamin E for almost > > > 1 week. > > > > > > today we are in the car and i told him we were going to the park > > to play baseball. we get > > > to the park and he says " ba ba! " very purposefully, sounding > > like " baseball " . so we get out > > > and he's swinging at that baseball hitting it all over the grass > > for at least 15 minutes. > > > > > > then we get to the playground and he's making all sorts of new > > sounds like " RARA MABA > > > weh weh wa " and when i ask him what color something was he > > says " REH! " it was red. > > > > > > i was at the top of the slide and asked him if he wanted to get on > > my lap but he pushed > > > my back so i went down. then he went down by himself! he has > > always hated slides. > > > > > > then a girl about 8 years old comes over and starts hugging him > > and wanting to play with > > > him. he liked it! and she was really in his face and being quite > > loud but wonderful with > > > him. he was having fun and laughing. then she tries to pick him > > up and he's still holding > > > my hand, she says " let go! " and i realize, yes i should let him > > have fun! i am always > > > sheltering the boy because of his fears. so off they run and he's > > laughing and they're > > > having a great time. we play baseball with her brother until he > > finally gets overstimulated > > > after an hour and a half of good exercise and loud play. i can't > > believe this is my boy. i > > > think it's the vitamin E. it seems like it's given him the energy > > or ability to join in without > > > fear and it's great! i have heard of vit E making kids hyper but > > it seems this is just what > > > mine needed. when i run out of the bottle i will wait a couple > > days on it and see what > > > changes happen. it could just be the time in his life to get over > > the shyness but i doubt it. > > > it's too coincidental. sorry for the long story i'm just so happy > > and thankful to you all > > > about the things i have learned being part of this group. next > > we're doing proEPA > > > magnesium and zinc. not all at once! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2008 Report Share Posted June 26, 2008 I got my Xolair back yesterday after miserable months without it. I fully expected that it would take some time to kick in, after all, it originally took four months to have any affect. I injected last night, and this morning, I could breathe! My peak flows are twice what they were the day before. My stuffy nose is clear. I actually walked two blocks without using my rescue inhaler. I'm not 100%, and I'm not going to start tapering my prednisone for a couple of days just in case this is some sort of placebo effect. I wonder if there has been a study of what happens when you go off and back on. I'd love to know how it worked so fast. (Thanks for the encouragement for my last post. I have been self-injecting since I started on Xolair four years ago. My former insurance company wouldn't allow it, so I had to have them send it to my Dr. and go pick it up. I much prefer having it delivered to my house!) I can see a light at the end of the tunnel. With Xolair before, I got to the point for the first time in my 49 years that the only other asthma medicine I had was a rescue inhaler I used perhaps once per week. I actually had one expire before I could use it up! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2009 Report Share Posted December 28, 2009 Excellent. i am so happy for you. it sounds like you are in a great district. do yourself a favor and " never " move. As for myself, dont be angry that the rest of the areas dont do the same. it gives me a reason to keep going. i am italian, and i just LOVE to argue. LOL > > Okay, just when I think this school district can't possibly top themselves, they do it again. I feel so happy for us and so ANGRY that other places can't or won't. It doesn't make any sense. This district goes above and beyond anything I've experienced and anything anyone else has told me before. >  > On 12/15/2009 - " We are happy to inform you that your child has been recommended to attend the new Language ABC class. >  > This class will cover such topics as vocabulary building, complex direction following, social communication techniquies, and self-advocacy skills. >  > This class will take place during the ABC block, insuring that your child does not miss any core classes. " >  > I think this is pretty cool! > > > Miriam > Mim > Mimmom > mimbanash@... >  >  > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2009 Report Share Posted December 29, 2009 Miriam, thanks for sharing your good experience. As the mom of a Aspie in a fabulous school district it can be so disheartening to hear all the bad stories all the time. My son just started middle school (5th grade here) and the experience has been wonderful. The teachers have been going out of there way to help my son succeed. The special ed teacher and principle are kind and loving and proactive in working with s. About a month ago we had our first parent teacher conference with his home room teacher and the special ed teacher. My husband and I were laughing about the fact that s got a D in choir because " choir is a participation class and s doesn't participate in the singing " . Choir has always been difficult for him because it is so noisy and he is not musical in any way. He doesn't like loud. Anyway, the teacher was telling us that basically they had been telling him that it was okay not to sing but that he must go to the class and behave and participate in the activities that are not about singing. He had been doing very well under those guidelines. I was telling the special ed teacher that I really didn't care if he got a D in that class. She then told me that she had already discussed it with the principle and that they had decided that they were going to eliminate the participation in singing from his grade since he was learning the basic lessons and participating in the rest of the class. I was just so impressed by this because to me it illustrates that they really want him to succeed and that they are really looking at him and his limitations and not expecting him to fit into the " typical " student mold. Another example of just the kindness that I have experienced this year was early in the year s discovered one of the teachers had suckers in her desk to give to the kids as rewards. Well one day he snuck into her classroom when it was empty and stole a bunch of the suckers. She called me, not to tell me all about my bad kid but to ask me if the consequences that they had come up with were okay with me. Then I found out a couple of weeks later that they had put into place a reward system for s so that if he got enough good behavior stickers during the day he would get a sucker from the teacher at the end of the day. They took a bad thing and turned it around into one of the biggest motivations for my son. Thanks for sharing, Vickie > > Okay, just when I think this school district can't possibly top themselves, they do it again. I feel so happy for us and so ANGRY that other places can't or won't. It doesn't make any sense. This district goes above and beyond anything I've experienced and anything anyone else has told me before. >  > On 12/15/2009 - " We are happy to inform you that your child has been recommended to attend the new Language ABC class. >  > This class will cover such topics as vocabulary building, complex direction following, social communication techniquies, and self-advocacy skills. >  > This class will take place during the ABC block, insuring that your child does not miss any core classes. " >  > I think this is pretty cool! > > > Miriam > Mim > Mimmom > mimbanash@... >  >  > Quote Link to comment Share on other sites More sharing options...
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