Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 Wow is right, . At this point, Dane doesn't look like he has a trace of plagio. congratulations on some correction. Kellie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 what a beautiful little noggin!! so glad that the band is working great for you..cheers to another great job done by a band!! and of course to you as well~~keep up the great work and i am looking forward to seeing graduation pics...how long has he been in the band..i'm afraid i don't know any of your background, his age..ect... brenda mom of tucker banded 8/23/01 graduated 3/6/02 WOW! I just took Dane's band off. I swear he gre again this afternoon! I wanted to post these before and after pictures. His flat spot is on his right side. It is kind of hard to see because he still had some of his newborn hair in that picture. The ears and eye look great too! Just had to share! I ought to send this to my MIL! I swear I would do commercials for bands/helmets! I am so pleased! For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 WOW WOW WOW ! OMG, his head looks about as close to perfect as I can imagine! Seriously, his head looks great to me! Are you still planning on getting him a 2nd band? How is your ins. battle coming along? You should be thrilled with his correction thus far. He shouldn't be far from graduating at this rate. I'm very happy for you! Debbie Abby's mom DOCGrad MI > I just took Dane's band off. I swear he gre again this afternoon! I wanted to post these before and after pictures. His flat spot is on his right side. It is kind of hard to see because he still had some of his newborn hair in that picture. The ears and eye look great too! Just had to share! I ought to send this to my MIL! I swear I would do commercials for bands/helmets! I am so pleased! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 - We chatted late one night. We were the only ones there! Dane was 5 months when he was banded. He will be 8 months 5/10. He wouldn't sit still to let me take a face pose, but his asymmetry is quickly disappearing. Dane's mom (DOC Band 2/14) > what a beautiful little noggin!! so glad that the band is working great for you..cheers to another great job done by a band!! and of course to you as well~~keep up the great work and i am looking forward to seeing graduation pics...how long has he been in the band..i'm afraid i don't know any of your background, his age..ect... > > brenda > mom of tucker > banded 8/23/01 > graduated 3/6/02 > WOW! > > > I just took Dane's band off. I swear he gre again this afternoon! I wanted to post these before and after pictures. His flat spot is on his right side. It is kind of hard to see because he still had some of his newborn hair in that picture. The ears and eye look great too! Just had to share! I ought to send this to my MIL! I swear I would do commercials for bands/helmets! I am so pleased! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 No, we aren't getting a 2nd band. I prepared for the worst and hoped for the best with getting a 2nd one. I am so happy. You can see some flatness from the back of the head, but I don't think it's anything anyone would notice and wouldn't interfere with him wearing a hat. Dane's mom (DOC Band 2/14) > > I just took Dane's band off. I swear he gre again this afternoon! > I wanted to post these before and after pictures. His flat spot is > on his right side. It is kind of hard to see because he still had > some of his newborn hair in that picture. The ears and eye look > great too! Just had to share! I ought to send this to my MIL! I > swear I would do commercials for bands/helmets! I am so pleased! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 Hooray - he looks great!!! It's great to hear how pleased you are with the results this far!! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2002 Report Share Posted May 1, 2002 Wowza !!!!! Dane is looking GREAT!!!! He'll be graduating in no time at all! Yippeeeeeeeeeeee! ) Kendra WOW! I just took Dane's band off. I swear he gre again this afternoon! I wanted to post these before and after pictures. His flat spot is on his right side. It is kind of hard to see because he still had some of his newborn hair in that picture. The ears and eye look great too! Just had to share! I ought to send this to my MIL! I swear I would do commercials for bands/helmets! I am so pleased! For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2002 Report Share Posted May 1, 2002 , WOW is right!! Dane looks fantastic! ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2002 Report Share Posted May 1, 2002 , Dane's head looks terrific!! I can't believe how quickly time is going, he'll be done beofre you know it! Way to grow to Dane! Niki Kaylie & Danny (STAR grads) Phila., PA > I just took Dane's band off. I swear he gre again this afternoon! I wanted to post these before and after pictures. His flat spot is on his right side. It is kind of hard to see because he still had some of his newborn hair in that picture. The ears and eye look great too! Just had to share! I ought to send this to my MIL! I swear I would do commercials for bands/helmets! I am so pleased! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2003 Report Share Posted March 19, 2003 on 3/19/03 7:46 AM, Toby, at paulandtoby@..., wrote: > To make a long story > short, I found an AP practitioner and started taking doxycyline 100 > mg bid as of 1 week ago. My pain levels have dropped dramatically to > just overnight stiffness and some nagging daily pain and I only have > to take one Vioxx every 2-3 days. I really can't believe how quickly > this is working!!! :-) Hi Toby, and welcome to the group. That is a quick response! I hope it holds steady and strong, but don't be disappointed if you have some times which seem worse before it is all better, or more aches and pains as you introduce the other meds. As early as you got started, you may well have a quick recovery. Keep us posted! -- Jean jpro2@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2003 Report Share Posted March 19, 2003 Hi Toby Good to hear! You have been really lucky to havesuch a quick response but believe me the ap is the only way. I am glad you spard yuourself the toxic medsas you will do much better as a result! Good to see the cat has done well too! Just keep tuned and good for you for becoming empowered! Love Marge > Hi everyone, > I'm new to the group. I developed very sore joints in my hands, > wrists and toes around mid-December. I very quickly found that I was > becoming disabled by it! I was taking two Vioxx's a day to just be > able to use my hands at all. After seeing a rhuematologist in > January, I was tentatively diagnosed as having Lupus. (My CRP is > normal, RA factor normal, Anti-RO antibody very high, ANA 1:200) She > put me on Plaquenil 200 mg bid. I continued to worsen despite taking > all that Vioxx and the Plaquenil. > I decided to take matters into my own hands and started researching > the internet and came across this AP protocol. To make a long story > short, I found an AP practitioner and started taking doxycyline 100 > mg bid as of 1 week ago. My pain levels have dropped dramatically to > just overnight stiffness and some nagging daily pain and I only have > to take one Vioxx every 2-3 days. I really can't believe how quickly > this is working!!! :-) > My doctor's regimen also includes Nystatin powder which I just > started today. I am also going to be adding Flagyl in about another > week and will also do a parasite cleanse. (Talk about cleaning all > the beasties out of me!) He also wants me on a 'low fermentation > diet' (no sugar, refined carbs, etc). > I just wanted to thank everyone in this group for steering me in the > right direction and helping me to nip this disease in the bud before > I really became disabled by it or needed to go on all those horrible > medications. > It's hard to believe that more doctors aren't trying the AP protocol > for their patients.. it really works! > Forever grateful, > Toby > P.S. I have a cat that also developed severe arthritis in his hips > and colitis and was on death's door at the same time that I became > sick. I put him on the AP protocol as well (using Clavamox) and he > has totally recovered! (I was able to wean him off steroids as well.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2005 Report Share Posted March 13, 2005 Amy, And again, thank you for starting this group. This group reminds me of the early days of the CML International List when everyone was there for everyone else. If it wasn't for that group and the people who made the group work I seriously doubt that I would be here today. Cogan is a dear friend from the old days. I met her during the clinical trials in Portland. She has more to offer about CML than anyone I know on the various CML lists. You are very fortunate to have her posting here. My very good friend Tracey is this list's gain and a terrible loss for the CML list. I complete the group of 3 CMLers that have been banned from posting on the CML site. From me you will get tremendous support. Hoping to see everyone on the regular chats and anxious to assign my first Zero Club member from this list. Zavie [ ] WOW! I'm so excited to see all the stories that I was used to when I was first diagnosed. Thank you all for joining and being part of. " K " you ROCK, what a strong person. , I'm so glad you found your way here and can share your story. There are so many more that I just can't name them all. This group is for everyone, and though I appreciate all the Thank yous' for starting it, its your group, make it work and we will all benefit. I love my CML friends, with out them my world with CML is very scarry. Everyone I have ever talked to on the group, in the chat, or emails has been so supportive, without you all I would not have been so strong. THANK YOU! Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Was carnitine prescribed with the Depakote? it should have been- if not, you are going to want to get those levels checked. -GA ----- Original Message ----- From: " dgray3309 " <dianagray3309@...> > I would have probably been content to continue down the Depakote path > had my son not developed insulin resistance, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 ----Yup. Maybe even more so b/c adults have had problems longer. My daughter had no visible reactions to starting enzymes. I, o the other hand, had several symptoms from AFP peptizyde. and have duly noted the recommendations to start low and slow -- is this equally true of adults or just young children? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 , I agree with Josie, Low and slow is a good idea to follow for all people but particularly the subgroup that we are in, SENSITIVE PEOPLE. As you well know, many autistic people are hyper sensitive and those who are hypo sensitive usually change after removing gluten and casein. You know, I would have never known I have AS if it weren't for my son, and my researching for him obsessively. On the note of getting your children to a DAN, great idea. There will be a lot of expensive testing, consider them the most important investment of your life. The more you do testing, the more treatment will be tailored around the specific metabolic needs of your children and their deficiencies. Mental illness symptoms often have connection to infectious diseases and gut issues are big one there. However, infections have been around as long as we have been on this planet. What is different now is the presence of too much toxicity and this terrible toxic burden that the whole world is experiencing is resulting in autoimmune disorder and thus impaired immune cannot fight infections. I really believe that your son's manic features might have been actually connected to serotonin imbalance and the fact that depression itself can cause psychotic episodes as does OCD can cause aggressive and agitated behavior. Believe me, I am an artist, and almost all my friends who are creative people are NOT neurotypical. I know a lot from the inside mental illness through myself and an army of totally remarkable and brilliant people (friends) as well as my neurotic immediate family. Mood stabilizers do work for some bipolar people but are you certain he is bipolar. Does he have episodes of grandiosity and ellation? non verbal and bipolar are not the most compatible combo. A lot of psychiatric drug are being given very recklessly. I am not telling your son doesn't need one but Is it really Depekot or did he need to be treated for anxiety and/or OCD. I really recommend to do a testing for Amino acids level. My child had severe anxiety from time to time and would not do anything that he wasn't good at publicly. It has been barely a month after he started on custom Amino Acids and he went from a nonverbal child to developing more than sixty words in a couple of weeks (at least fifteen of them today). We had our first consultation with his DAN last November and one follow up since his test results, so it hasn't been long. I did start making dietary changes and supplementing through research and help of fabulous people in this group. I am very excited that your have started your biomed journey and wish you gain much beyond your expectation. I think what is helping my son is also my optimism and I love the fact that you have that too. If you ever need cheering on just let me know. I am a person motivated by hope and faith, though I am not a religious person. Let's say I have faith in the greater collective wisdom of this universe and see each hardship in life as an opportunity presented, because we are suppose to learn something important from. Wishing you a great journey, Haleh --- Josie Lecraw <josie.nelson@...> wrote: > ----Yup. Maybe even more so b/c adults have had problems longer. My > daughter had no visible reactions to starting enzymes. I, o the other hand, > had several symptoms from AFP peptizyde. > > > > and > have duly noted the recommendations to start low and slow -- is this > equally true of adults or just young children? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 I'd say it's equally important for children and adults to go slow when introducing enzymes. Myself, it gave me a priceless view into what my son was experiencing. Wow! You people are impressive ...and prolific. I'm not sure I can keep up. Thanks to Haleh and Josie for the welcoming responses, and I thoroughly enjoyed the ensueing discussion re: B12. The reference to the 35 y.o. man who became conversational is inspiring. I had pretty much given up on that dream after all these years, but who knows? We have our first appt. with a Dan practitioner at the end of the month, as well as an endocrinologist to explore the insulin resistance. I am reluctant to start anything more until then. I hate to admit it, but I would have probably been content to continue down the Depakote path had my son not developed insulin resistance, so maybe this is a blessing in disguise. I have the Zyme Prime and AFP Peptizyde, and have duly noted the recommendations to start low and slow -- is this equally true of adults or just young children? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 YAY LUKE!! I know I'm not the only mom here reading these great success stories with tears in my eyes! This is awesome! I am so thankful to have this site to have turned me on to the Vitamin E. I had heard about the fish oil and that's why I joined this board, to find out what to give my son! My OT told me the other day that Gavin was saying sentences. She said it so casually and I just burst into tears of joy! He told her he wanted to wash hands. This is a child that said Mama for everything! Then after we left we went to the store. We were starting to go across the parking lot and he said, " I wanna hole han " ! I know that in a few months I will probably be saying, " I don't remember asking you what you wanted... " but for now, I am thrilled. I did have to take him off of the E for a few days because of constipation issues that are now resolved, but he didn't seem to regress too much. Very exciting stuff! Mandy Knapp Creative Memories Unit Leader (847) 245-4133 (224) 577-8304 www.mycmsite.com/mandyknapp Your Life | Your Story | Your Way [ ] wow! > 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 September 29, 2006 Report Share Posted September 29, 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 September 29, 2006 Report Share Posted September 29, 2006 YAY LUKE!! I know I'm not the only mom here reading these great success stories with tears in my eyes! This is awesome! I am so thankful to have this site to have turned me on to the Vitamin E. I had heard about the fish oil and that's why I joined this board, to find out what to give my son! My OT told me the other day that Gavin was saying sentences. She said it so casually and I just burst into tears of joy! He told her he wanted to wash hands. This is a child that said Mama for everything! Then after we left we went to the store. We were starting to go across the parking lot and he said, " I wanna hole han " ! I know that in a few months I will probably be saying, " I don't remember asking you what you wanted... " but for now, I am thrilled. I did have to take him off of the E for a few days because of constipation issues that are now resolved, but he didn't seem to regress too much. Very exciting stuff! Mandy Knapp Creative Memories Unit Leader (847) 245-4133 (224) 577-8304 www.mycmsite.com/mandyknapp Your Life | Your Story | Your Way [ ] wow! > 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 September 29, 2006 Report Share Posted September 29, 2006 i thought i would stop for a few days when i ran out just to see exactly what the effect each one has. i do not have the patience to introduce everything separately a month apart. i want to see results as fast as possible so i started multiple supplements at the same time. i know that is hasty but i figure he is not prone to allergies. i never know what the effect is of each supplement because of this . so instead of waiting to introduce them and seeing what happens, i introduce everything, get as much benefit as we can get, and then when the bottle runs out i wait a couple days to see what happens. although, i must admit, i don't want to wait because i would feel bad about missing even 3 days of benefit. even small benefits. they need as much help as we can give them. btw i just discovered that his vit E is dl... synthetic. i will be switching today. what is the downside of choosing synthetic? i know EVERYONE says make sure you get natural but i guess i read it wrong when i bought it. > > 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 September 29, 2006 Report Share Posted September 29, 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 September 29, 2006 Report Share Posted September 29, 2006 It would be interesting if more kids with apraxia started having more complete nutritional analysis to identify other deficiencies. If the kids are deficient in EFAs and vit E, there may well be other common deficiencies. > > 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 September 29, 2006 Report Share Posted September 29, 2006 i thought i would stop for a few days when i ran out just to see exactly what the effect each one has. i do not have the patience to introduce everything separately a month apart. i want to see results as fast as possible so i started multiple supplements at the same time. i know that is hasty but i figure he is not prone to allergies. i never know what the effect is of each supplement because of this . so instead of waiting to introduce them and seeing what happens, i introduce everything, get as much benefit as we can get, and then when the bottle runs out i wait a couple days to see what happens. although, i must admit, i don't want to wait because i would feel bad about missing even 3 days of benefit. even small benefits. they need as much help as we can give them. btw i just discovered that his vit E is dl... synthetic. i will be switching today. what is the downside of choosing synthetic? i know EVERYONE says make sure you get natural but i guess i read it wrong when i bought it. > > 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 September 30, 2006 Report Share Posted September 30, 2006 It would be interesting if more kids with apraxia started having more complete nutritional analysis to identify other deficiencies. If the kids are deficient in EFAs and vit E, there may well be other common deficiencies. > > 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 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...
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