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Nat1980
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05 Mar 2013, 12:03 pm

I came across this video on utube about curing autism and biomedics and it said something about b12 injections and chelation(?) not sure what any of this is , tried looking it up on the web couldn't find much description of what exactly it is. can anyone explain it and what it supposably does....does it include the gluten free diet? wondering what all these "treatments" are for, are they only for the kids that have gut issues, or allergies or they to use just in general,.......has anyone noticed a difference/improvement with there child while using these.....a little insight..... I am confused a bit!



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05 Mar 2013, 1:18 pm

The term "biomedical" encompasses a lot of things from extensive allergy and food sensitivity testing, restrictive diets (gluten-free and casein-free), lots of different types of supplements, etc. It is often associated with providers known as DAN doctors (DAN = Defeat Autism Now). While some of this may be perfectly harmless, except possibly to one's wallet, other things are pretty scary. There are documented cases of kids dying from chelation therapy. Chelation therapy is supposed to remove heavy metals from the body as some people claim that there is evidence autism is caused by a build up of heavy metals. B12 can also be toxic.

There appears to be a fair amount of anecdotal evidence that the restrictive diets are beneficial for some kids. I read a book called "Special Needs Kids Eat Right" (at least I think that was the title). There was some pretty convincing information about a condition known as "leaky gut syndrome". However, I don't think my child has it. The problem for me with the DAN doctors is that very little of their methodology is accepted by the main-stream medical community and very little, if any, of it is backed up by the type of rigorous clinical testing that might help prove the efficacy of some of the recommended treatments.

On the other hand, there is evidence of bias in some of the supposedly rigorous clinical testing which makes it REALLY hard to believe anything! For example, momsparky posted a while ago about evidence of publication bias in the statistics that showed certain medications (SSRIs) were effective in reducing repetitive behavior in autistic kids. This sounds suspiciously like BigPharma trying to make a buck. :(

Unfortunately what it boils down to is that we as parents of kids on the spectrum have to read and study a lot and find professionals whose opinion we can feel comfortable with. There are a whole host of people out there screaming that they can cure your child's autism with diet and/or supplements and others screaming that if you medicate them with the right FDA approved pharmaceuticals that all will be well. The truth is that the medical community does not yet know what causes autism or autistic behaviors. A treatment or therapy that results in reduced challenging behaviors in one kid won't help the next one at all. It is all confusing and you want to consider carefully any treatments you choose to follow.



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05 Mar 2013, 2:26 pm

Bombaloo wrote an excellent summary.

My personal feelings: sometimes fringe medicine stumbles on something, sometimes it just wastes your money. Biomedics are stil fringe, but anecdotal evidence shows that some kids really do improve with diet changes. Our conclusion here is that it isn't necessarilly GFCF; there can be many other food sensitivities that make a child feel sick, and a child that feels sick will not function at his best. Pretty common sense. Many here are also either GF OR CF, not both. I stay far, far away from anyone talking metals contamination or chelation, unless you know your child had very specific lead exposure that was not a vaccine. The CDC started a controlled study on chelation and dropped it mid-way due to the negative effects from treatment it was observing. While SSRIs are not a biomed, I will note that I am also cautious on that; I feel like it is a last resort for a child with certain co-morbid conditions, and not a treatment for AS by itself, although that said for the right family they can be true gifts.

There are a lot of people willing to make money off a parent's worry, but that does not help the child. I feel really, really good about the "pay attention to your unique child" protocols that we have on this forum, and truly believe that when you invest one on one, focused time on your child, and learn how he thinks, you get really far in making the best future for your family that you can. There are a lot of can't hurt - might help things out there that might work for you, too. Just thread carefully.


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Nat1980
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05 Mar 2013, 4:59 pm

What are SSRI's?
so most the biomed and chelation talk is false is there any evidence of it actually working in certain situations....
can you explain a little more about the gluten- free and casein-free diets, I have heard of these mentioned quite alot what are they supposed to do or help with?, is it only for children that experience the " leaky gut syndrome"? my child seams not to have any heath issues.
I know they don't know much about how autism develops, his diagnosis doctor said that although they don't "know" what causes it, they where pretty sure it was genetic that being said, my husband was adamant that our son not get the MMR shot because his cousin has non verbal/functioning autism. and he grew up being told it was caused from the MMR shots... So we exempted my son for Hubbys peace of mind ........he still has it....... anyways
so on another note my son was evaluated, was diagnosed and that was it, are there any other things i should have him tested for.......immune? fragile-x? heavy metals? genetics?what are the common "test" that should be ran, on a diagnosed child to see if there are any other issues going on



ASDMommyASDKid
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05 Mar 2013, 5:36 pm

I would not run any medical medical tests if you do not suspect any health issues. What is your child's age and what issues is he having?



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05 Mar 2013, 10:24 pm

Nat1980 wrote:
What are SSRI's?
so most the biomed and chelation talk is false is there any evidence of it actually working in certain situations....
can you explain a little more about the gluten- free and casein-free diets, I have heard of these mentioned quite alot what are they supposed to do or help with?, is it only for children that experience the " leaky gut syndrome"? my child seams not to have any heath issues.
I know they don't know much about how autism develops, his diagnosis doctor said that although they don't "know" what causes it, they where pretty sure it was genetic that being said, my husband was adamant that our son not get the MMR shot because his cousin has non verbal/functioning autism. and he grew up being told it was caused from the MMR shots... So we exempted my son for Hubbys peace of mind ........he still has it....... anyways
so on another note my son was evaluated, was diagnosed and that was it, are there any other things i should have him tested for.......immune? fragile-x? heavy metals? genetics?what are the common "test" that should be ran, on a diagnosed child to see if there are any other issues going on

SSRIs are antidepressant medications, one of the most common is Prozac.
Gluten-free and casein free, basically means, no wheat products (gluten) and no dairy products (casein). It seems a lot of people try this when their child has constant digestive issues, loose stools and/or a lot of trouble with constipation. Or when the child seems to be constantly, intensely irritable. It can be a difficult diet to follow so it takes a serious commitment and a reasonable belief that it will help. Personally we have not tried this route. Diet-wise we have cut out artificial food dyes and try to eat more organic and less processed food.
Obviously the MMR vaccine wasn't the cause of your son's autism. I hope you get him vaccinated now.
I think for many people, once they get a diagnosis, they look towards behavioral therapies such as ABA (applied behavior analysis) or things like speech therapy, occupational therapy or physical therapy depending on your child's needs.
Tell us more about your kiddo. What does he like to do, what does he hate to do? What is easy for you guys and what are some things that are really difficult? As the above poster said, those medical tests you mentioned are probably not going to be very useful at this point in the game. I mean you can do genetic testing but the results are not going to help you or your child learn how to cope.



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05 Mar 2013, 10:27 pm

I can't answer most of your questions. I can say that my son had no symptoms of "leaky gut syndrome." Yet he does much much better on a GFCF diet. There is suposedly a link betw the gut and the brain. All I know is that my son is far more peaceful. He will always be Aspie and always think differently and slowly, but things don't bother him so much. He doesn't argue with me all day long any more.

I don't argue with success, but at the same time I don't understand it.

I decided to try it because it was recommended for me for entirely differnt reasons, and I had heard it on wrongplanet that it helps possibly 1/3 of ASD people who try it.

On vacation my son accidently had a piece of glutonous bread. He was a very unhappy guy and argued with everyone for about 5 days. Night and day difference.



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06 Mar 2013, 1:51 am

A gluten and casein free diet was developed for people with celiac disease, and since it works for that, it is my understanding that some doctors decided to try it with other patients. The experiment seems to have preceded the theories, and the truth is some people found they felt better, so that led to researchers working out the why. You can probably search out the theories, although I'm not convinced we, as parents, need to know them; you keep a food diary, you look for patterns, and then you decide if a special diet is worth trying out.

One thing to note is that most people who benefit from diet changes do not need to cut out both gluten and casein; by far, gluten is the more frequent sensitivity. Some people benefit from cutting out something else entirely. We discovered by accident that my son, for example, is sensitive to soy, and so we are careful to avoid feeding him products with soy. Because soy is a known sensitivity, we would have a difficult time going either GF or CF and so, have not tried it. But my sister has an autoimmune disease and decided to go gluten free, with pretty good results.

On this forum, we do not believe that diet causes nor cures ASD. But if child has food sensitivities that make him feel sick, he is not going to function his best. Pretty common sense, really. I do think that food sensitivities are dramatically on the rise, and it is hard to be sure why, but we have lost many of our inborn digestive bacteria over the last half century, and that could be a contributor; who knows. Simple truth is that lots of people find they feel and function better if they cut out certain foods, so that can be worth looking into.

In the parenting index we have stickied there are links to lots of threads on the topic. It can be worth looking into.


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Nat1980
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06 Mar 2013, 3:11 pm

Quote:
ASDMommyASDKid
Posted: Wed Mar 06, 2013 8:36 am Post subject:
I would not run any medical medical tests if you do not suspect any health issues. What is your child's age and what issues is he having?


well i have seen stuff like, "so and so is pdd- nos with sensory sensitivity, temperature sensitivity and adhd", so i am wondering if there is different testing for sensory issues, he does not like anything loud unless he is the cause of it, or is there separate testing for adhd or temperature. ect ect. as far as heath issue i do not suspect any physical heath issues, he eats anything junk food, loves sweets and has a addiction to pb &j sandwiches, he is a very picky eater and half the time we are fighting or begging him to eat his dinner, especially vegetables or salads, which i don't know if it is him just being a typical kid or what, He does love meat though, he will not eat "green stuff", any green foods like lettuce, bell peppers, relish, pickles, green beans peas ect etc not even if it is on something he likes like a hamburger. he will throw the whole thing away he seems to have no issue with things like milk or eggs or yogurt, so i think he is ok with dairy.
I have never noticed a correlation between his foods and his moods but I guess a food diary would tell me if there is one......

Quote:
I think for many people, once they get a diagnosis, they look towards behavioral therapies such as ABA (applied behavior analysis) or things like speech therapy, occupational therapy or physical therapy depending on your child's needs.
Tell us more about your kiddo. What does he like to do, what does he hate to do? What is easy for you guys and what are some things that are really difficult? As the above poster said, those medical tests you mentioned are probably not going to be very useful at this point in the game. I mean you can do genetic testing but the results are not going to help you or your child learn how to cope.


He is starting ABA therapy sometime in the next 2 weeks, we got accepted to a pilot program here in utah that they are trying which funds the ABA, bad part is he gets kicked off when he turns 6 in june so he will only have it for 4 months unless we can get approved through another program. and i have looked into speech but there is no one in our area that we can hire privately and the school keeps denying him for speech. I was also told to get him tested for reciprocal speech to see if that is a issue? anyone done this.

as far as the genetic testing i was wondering about this. what it is for? like if they test my son and my husband (that i think is also ASD) will it match. i'm not sure what the purpose of it is for but i know it was offered to us through the health department. I also have 2 step sons that we believe are ASD but they do not live with us, and several nieces and a nephew on husbands side also so basically just wondering if getting my son done with the genetic testing will help them figures out a family genetic issue.or possibly confirm my beliefs about my hubby.



StarSplit
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07 Mar 2013, 6:45 pm

I don't have kids on the spectrum, but I'd like to weigh in as a 26-year-old woman who has Asperger's. I have struggled with multiple allergies, food sensitivities, and gut issues my entire life. I've been on the GFCF diet for the past three years and it has improved my health in a LOT of different ways.

There is a theory that gluten and casein molecules, when improperly broken down, connect to the opioid receptors in autistic people's brains. Basically, it's like getting high. When I drink enough milk, I feel a 'buzz' like I've had alcohol. Then I crash about 4-6 hours later, become very moody, withdrawn, and irritated at everything. I also become much more sensitive to sensory input like noises and lights...sound a bit like a hangover?

Kids can't tell you this, of course, because they've never had alcohol (and some autistic children either don't talk or have enough words to explain how they feel). Keep in mind that while you might not make a connection like milk = worse behavior, some of these reactions don't happen until hours later, or even the next day. I'm not saying it's the same for every kid; this might not help you at all but if I were you I'd try the gluten and casein free diet for a little while to see what happens. No, it's not a 'miracle cure', but it's not like it'll make things any worse.

Watch the videos at mendingautism . com. They are good explanations of what the biomedical treatments are and why they work (when they do.)



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07 Mar 2013, 8:51 pm

Nat1980 wrote:
well i have seen stuff like, "so and so is pdd- nos with sensory sensitivity, temperature sensitivity and adhd", so i am wondering if there is different testing for sensory issues, he does not like anything loud unless he is the cause of it, or is there separate testing for adhd or temperature. ect ect. as far as heath issue i do not suspect any physical heath issues, he eats anything junk food, loves sweets and has a addiction to pb &j sandwiches, he is a very picky eater and half the time we are fighting or begging him to eat his dinner, especially vegetables or salads, which i don't know if it is him just being a typical kid or what, He does love meat though, he will not eat "green stuff", any green foods like lettuce, bell peppers, relish, pickles, green beans peas ect etc not even if it is on something he likes like a hamburger. he will throw the whole thing away he seems to have no issue with things like milk or eggs or yogurt, so i think he is ok with dairy.
I have never noticed a correlation between his foods and his moods but I guess a food diary would tell me if there is one......


Typically, they test for things when they see signs or when they give you a screening tests and see potential issues. There is not a point in being tested for everything under the sun.

When they test for autism, they do screening tests like the ADOS and you can also request tests based on other observations you might have.

You can ask for OT testing that will cover a lot of the sensory issues: They do not necessarily treat them so much as work around them. Sensory issues range and include a lot of possibilities. They really do not do much for them unless they impede your child in someway. Some OTs will work on desensitizing and that kind of thing, but a lot of it is just being aware what can upset your child and either avoiding it or accommodating for it.

Picky eating is a common issue, but it does not mean there are food sensitivities in a medical sense. it is often a sensory thing having to do with texture, or appearance or just not liking the taste.



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07 Mar 2013, 10:06 pm

Nat1980 wrote:
so most the biomed and chelation talk is false is there any evidence of it actually working in certain situations....


Chelation therapy is what you do for lead, arsenic or mercury poisoning. It removes heavy metals from the body and does nothing more, and can be harmful in itself.

I like Emily Willingham's take on the health science behind autism, she is an excellent watchdog: http://www.forbes.com/sites/emilywillin ... treatment/

There is a connection between fragile X syndrome and autism, if your child has had a full medical assessment for autism they will probably check for it. Have you had an ADOS or a visit with a pediatric neuropsychologist or a developmental pediatrician?



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08 Mar 2013, 11:46 am

StarSplit wrote:
I don't have kids on the spectrum, but I'd like to weigh in as a 26-year-old woman who has Asperger's. I have struggled with multiple allergies, food sensitivities, and gut issues my entire life. I've been on the GFCF diet for the past three years and it has improved my health in a LOT of different ways.

There is a theory that gluten and casein molecules, when improperly broken down, connect to the opioid receptors in autistic people's brains. Basically, it's like getting high. When I drink enough milk, I feel a 'buzz' like I've had alcohol. Then I crash about 4-6 hours later, become very moody, withdrawn, and irritated at everything. I also become much more sensitive to sensory input like noises and lights...sound a bit like a hangover?

Kids can't tell you this, of course, because they've never had alcohol (and some autistic children either don't talk or have enough words to explain how they feel). Keep in mind that while you might not make a connection like milk = worse behavior, some of these reactions don't happen until hours later, or even the next day. I'm not saying it's the same for every kid; this might not help you at all but if I were you I'd try the gluten and casein free diet for a little while to see what happens. No, it's not a 'miracle cure', but it's not like it'll make things any worse.

Watch the videos at mendingautism . com. They are good explanations of what the biomedical treatments are and why they work (when they do.)


I really appreciate your "inside" description of how these food items affect you, as a unique individual. Thank you.


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