Guest guest Posted March 31, 2011 Report Share Posted March 31, 2011 A good friend of mine has a 5 year old non-verbal autistic son. Her doctor has had him taking these supplements/meds. for over a year (at around $1000/month). No change. She just heard of this blood test- she says it's better than IGG (think that's the right acronym). It shows food sensitivities- from VERY sensitive to those that are the least sensitive. A friend of hers did this test after years of medication for migraines that didn't work. She went off the foods that she was most sensitive too and NO more migraines (immediately) and no more drugs. So, this autistic boy is highly sensitive to tapioca and various things. She's taken him off most of these things in the last 2 weeks and started gluten free. In 2 weeks- he now sleeps through the night ( a first!!!), he's babbling sentences like a toddler (he was not talking at all before this) and he joined his " normal " brother at Little Gym today and kept up pretty well- wasn't " out of control. " Just a different kid in 2 weeks. His therapist is SO excited! Her doctor really argued with her re: taking her off his recommended meds. and doing this on her own. I will write back with the name of the blood test- she said it was very easy. Something, she said, we all should do. -marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2011 Report Share Posted March 31, 2011 yes please post the info. _______________________________ From: marie drury <marie_drury@...> Sent: Thu, March 31, 2011 8:15:56 PM Subject: [ ] nutrition and autism A good friend of mine has a 5 year old non-verbal autistic son. Her doctor has had him taking these supplements/meds. for over a year (at around $1000/month). No change. She just heard of this blood test- she says it's better than IGG (think that's the right acronym). It shows food sensitivities- from VERY sensitive to those that are the least sensitive. A friend of hers did this test after years of medication for migraines that didn't work. She went off the foods that she was most sensitive too and NO more migraines (immediately) and no more drugs. So, this autistic boy is highly sensitive to tapioca and various things. She's taken him off most of these things in the last 2 weeks and started gluten free. In 2 weeks- he now sleeps through the night ( a first!!!), he's babbling sentences like a toddler (he was not talking at all before this) and he joined his " normal " brother at Little Gym today and kept up pretty well- wasn't " out of control. " Just a different kid in 2 weeks. His therapist is SO excited! Her doctor really argued with her re: taking her off his recommended meds. and doing this on her own. I will write back with the name of the blood test- she said it was very easy. Something, she said, we all should do. -marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2011 Report Share Posted March 31, 2011 Hey Marie! Of course for medical reasons it's good to test for nutrient levels -in this group for sure carnitine is one all here should test for because it's typically very rare to be deficient in this one amino acid and for those tested in this group for some reason it's high. But unless this test is different than what I know people are still using today -something state of the art different that lets us know what's crossed the blood brain barrier -I'm not a huge fan of blood work for therapeutic nutrients based on that in most cases because over the years we know it's not always accurate with the oil levels for unknown reason and isn't worth the time, money, or the pain of getting the blood taken. One neurologist who used to go this route years ago told me of those that did the blood testing only about half had results while those that just went on the ProEFA or similar formula fish oils (this was prior to NV) had results. He stopped recommending it because he didn't find it worth the money they charged nor were the results accurate. I don't know if he wants his name here but I could share if you contact me. So for this group over the years, there are a group that still use the blood testing, but we ended up here with an attitude that if you have the time and money to go this route -go for it. Also a recent concern about this testing is due to a neighbor of mine who's very bright and researches everything and is currently very sick after going this route and being put on nutrient supplements (no drugs)based on blood testing. She's a nurse and her husband is an MD -she just went recently to a holistic GYN to help with her hormone levels. She was getting hot flashes and all -but she was still active and running even -her entire family they all run. She does marathons -so again a very active lady. The holistic GYN doctor tested her blood and based on the " state of the art " results put her on various supps -and now just a few weeks later she's very sick -very tired and has to go to a specialist to find out why she's so sick. And she didn't stop taking all that crap this person put her on!!! I spoke to her about going off all the supps and she said " But my levels were really bad I need to take them " and I told her what I know from this group....blood work is not always the answer. It tells you what is in the blood to the best of our knowledge with our current technology which of course will continue to improve -but it doesn't tell you what crosses the blood brain barrier. In our group that's what we need to know. And we can wait for the years for the research -and go with what is working. Again if you can get what you need through food -that's the best way. My neighbor has 2 kids and I've shared enough information with her from the archives here to prove to her that blood work doesn't lie -but you may only be getting a partial picture. Here is one of the old archives I shared with my neighbor My friend Suzanne who was the former VP of CHERAB prior to Cheryl pursued the testing route for her daughter as what we were all doing (just giving fish oils that worked) seemed " too simple " Unless we understand what is going on in our children and can make sure there is proper diagnosis/therapies for each -which we don't - and we understand what all the many various supplements are doing to help or not help, I'm not a huge believer of blood analysis for neurological conditions. This is why I choose to stick to those therapies/treatments/supplements I know are benign. I will add to that -unless there are medical reasons. My reasons on the blood analysis stem from EFAs due to another scientist/mathematician/mom in our group -former CHERAB VP Suzanne Smolyar who is now attending medical school to study EFAs due to her daughter 's amazing reactions on EFAs. " From: Suzanne Smolyar Date: Wed Mar 21, 2001 2:36 pm Subject: RE: [ ] progress Hi Gloria, I wanted to say that I know exactly how you feel. Last night at the table, 's brother (Ari 6.8) began to speak while was trying to say something, so she looked at Ari and said in a loud and affirmative tone " Shut up Ari, Shut up " . We were so excited and overjoyed at her using that phrase - we forgot to explain to her that it was inappropriate to use at the table and to her family members. We just thought it was golden -just like you did. Here is some background from one of my previous posts that will tell you why this is so exciting . " I am a mother of a beautiful 5-year-old girl, . Since the time she was about 11 mo old - I had a feeling that something was wrong with fine motor, gross motor and of course speech. Through the past 4 years, I have gone to numerous neurologists, best in the field, I must add. We have gone non-stop to therapy with , but the progress was painfully slow. did not speak- making it nearly impossible for us to communicate with her. Everyday at night I would kiss , and standing over her head I would say, " please start talking tomorrow " - subliminal messages - hoping they'd work. To no avail, my child was just not talking. Therapy helped, but progress was limited. I don't want to continue with this sob-story, as you probably all understand the fear and frustration in parents and the child as well. After becoming involved with Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2011 Report Share Posted March 31, 2011 WOW Marie!! That is absolutely fantastic news! Your friend has to be totally beside herself! That is great...and I can't wait to find out the name of test, as my son has had all sorts of allergy testing, but its always came back normal. Sent from my Verizon Wireless BlackBerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2011 Report Share Posted March 31, 2011 I need to ask her more about it, but I think she originally did more of a metabolic workup with the doctor and he had her put her son on all of these supplements to the tune of $1000/month and she said he's been on them for a year and have not worked at all. this other test is strictly a " food sensitivity " test- no supplements/meds. are recommended. actually, nothing is recommended. they just say what foods you're most sensitive to, somewhat sensitive to and least sensitive to. for instance, if i took it, i wouldn't be shocked if it said i have sensitivity to fish. I'm not allergic to it, but although i grew up in a family where we ate a lot of fish- i refused to eat it. It just wouldn't go down well. ________________________________ From: kiddietalk <kiddietalk@...> Sent: Thu, March 31, 2011 9:27:55 PM Subject: [ ] Re: nutrition and autism Hey Marie! Of course for medical reasons it's good to test for nutrient levels -in this group for sure carnitine is one all here should test for because it's typically very rare to be deficient in this one amino acid and for those tested in this group for some reason it's high. But unless this test is different than what I know people are still using today -something state of the art different that lets us know what's crossed the blood brain barrier -I'm not a huge fan of blood work for therapeutic nutrients based on that in most cases because over the years we know it's not always accurate with the oil levels for unknown reason and isn't worth the time, money, or the pain of getting the blood taken. One neurologist who used to go this route years ago told me of those that did the blood testing only about half had results while those that just went on the ProEFA or similar formula fish oils (this was prior to NV) had results. He stopped recommending it because he didn't find it worth the money they charged nor were the results accurate. I don't know if he wants his name here but I could share if you contact me. So for this group over the years, there are a group that still use the blood testing, but we ended up here with an attitude that if you have the time and money to go this route -go for it. Also a recent concern about this testing is due to a neighbor of mine who's very bright and researches everything and is currently very sick after going this route and being put on nutrient supplements (no drugs)based on blood testing. She's a nurse and her husband is an MD -she just went recently to a holistic GYN to help with her hormone levels. She was getting hot flashes and all -but she was still active and running even -her entire family they all run. She does marathons -so again a very active lady. The holistic GYN doctor tested her blood and based on the " state of the art " results put her on various supps -and now just a few weeks later she's very sick -very tired and has to go to a specialist to find out why she's so sick. And she didn't stop taking all that crap this person put her on!!! I spoke to her about going off all the supps and she said " But my levels were really bad I need to take them " and I told her what I know from this group....blood work is not always the answer. It tells you what is in the blood to the best of our knowledge with our current technology which of course will continue to improve -but it doesn't tell you what crosses the blood brain barrier. In our group that's what we need to know. And we can wait for the years for the research -and go with what is working. Again if you can get what you need through food -that's the best way. My neighbor has 2 kids and I've shared enough information with her from the archives here to prove to her that blood work doesn't lie -but you may only be getting a partial picture. Here is one of the old archives I shared with my neighbor My friend Suzanne who was the former VP of CHERAB prior to Cheryl pursued the testing route for her daughter as what we were all doing (just giving fish oils that worked) seemed " too simple " Unless we understand what is going on in our children and can make sure there is proper diagnosis/therapies for each -which we don't - and we understand what all the many various supplements are doing to help or not help, I'm not a huge believer of blood analysis for neurological conditions. This is why I choose to stick to those therapies/treatments/supplements I know are benign. I will add to that -unless there are medical reasons. My reasons on the blood analysis stem from EFAs due to another scientist/mathematician/mom in our group -former CHERAB VP Suzanne Smolyar who is now attending medical school to study EFAs due to her daughter 's amazing reactions on EFAs. " From: Suzanne Smolyar Date: Wed Mar 21, 2001 2:36 pm Subject: RE: [ ] progress Hi Gloria, I wanted to say that I know exactly how you feel. Last night at the table, 's brother (Ari 6.8) began to speak while was trying to say something, so she looked at Ari and said in a loud and affirmative tone " Shut up Ari, Shut up " . We were so excited and overjoyed at her using that phrase - we forgot to explain to her that it was inappropriate to use at the table and to her family members. We just thought it was golden -just like you did. Here is some background from one of my previous posts that will tell you why this is so exciting . " I am a mother of a beautiful 5-year-old girl, . Since the time she was about 11 mo old - I had a feeling that something was wrong with fine motor, gross motor and of course speech. Through the past 4 years, I have gone to numerous neurologists, best in the field, I must add. We have gone non-stop to therapy with , but the progress was painfully slow. did not speak- making it nearly impossible for us to communicate with her. Everyday at night I would kiss , and standing over her head I would say, " please start talking tomorrow " - subliminal messages - hoping they'd work. To no avail, my child was just not talking. Therapy helped, but progress was limited. I don't want to continue with this sob-story, as you probably all understand the fear and frustration in parents and the child as well. After becoming involved with Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2011 Report Share Posted April 1, 2011 the one thing she also said (I don't know much about autism) is that many autistic kids have gastro. problems and are in pain a lot of the time, but can't express it other than acting out. so, she thinks taking some of these irritating foods away from him is making him feel better, hence the sleeping through the night, etc. He did get the stomach flu a month ago (before all of this). He threw up for days and lost 6 lbs. Basically detoxed himself. She said even after that she could see positive changes in his behavior- why she even considered this and gluten free. ________________________________ From: " Racinnuts@... " <Racinnuts@...> Sent: Thu, March 31, 2011 9:38:40 PM Subject: Re: [ ] nutrition and autism WOW Marie!! That is absolutely fantastic news! Your friend has to be totally beside herself! That is great...and I can't wait to find out the name of test, as my son has had all sorts of allergy testing, but its always came back normal. Sent from my Verizon Wireless BlackBerry Quote Link to comment Share on other sites More sharing options...
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