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Tracker
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16 Aug 2011, 9:26 pm

Hello all,

If you are not already aware, I am working on an updated edition for my award winning book (awards that I give myself count, right?) And in my quest to improve the contents, I am adding a chapter about biomedical treatments. The subject in general has gotten a somewhat dubious reputation due to the whole chelation thing, but there is still some good stuff there. For example, certain diets have helped many people, and that is worth mentioning. And also there are plenty of useful supplements such as melatonin, inosotil, clonidine, etc. And that is worth mentioning in the book.

However, I don't have a very thorough list of what is supposed to help, and with what. So, I am hoping to crowd source some information from people who have more experience with this sort of stuff. So, if you have a child, and you give them a supplement, special diet, or something along those lines, please post and let me know what you are doing, and what it seems to help with.

For example, "I give my child melatonin, and it helps him to fall asleep better." Or, "I gave my child inosotil and it helps to reduce sensory problems". Just something along those lines would be helpful. Or, if you happen to know a list of useful supplements/diets/etc., please direct me to it.


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Annmaria
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16 Aug 2011, 9:38 pm

My Children take fish supplements, It seems to help more with teenage spots than concentration ??


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Mama_to_Grace
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16 Aug 2011, 10:08 pm

We did an elimination diet per Failsafe guidelines. Failsafe is not well known in US but well known in Austrailia an UK. There are some more difficult aspects to the diet but the ones that helped my daughter are complete elimination of all artificial dyes, annatto flavoring, MSG, HVP (hydrolyzed vegetable protein), DSG or GMP (flavor enhancers), all preservatives such as sorbic acid, benzoic acid, all benzoates and parabens, sulfites, nitrates, and ESPECIALLY TBHQ, BHA, & BHT (also known as antioxidants). Removing these substances has greatly improved frustration tolerance, irritability, itchy skin, and has lessened eczema patches.

We use Melatonin as a sleep aid but I have tried to cut down on the use as I have read some studies about the Pineal Gland and the body's conversion of Seratonin to Melatonin and what effects Melatonin supplementation might have on the entire endocrine system, if any. I have also noticed a slight increase in irritability with my daughter after many nights of Melatonin use. However, without Melatonin it takes my daughter up to 2 hours of trying to go to sleep to finally give in, whereas 1mg of sublingual Melatonin will induce sleep within 30 minutes.

We did give Inositol a try but unfortunately it caused an increase in sensory sensitivity with my daughter-with hearing and light sensitivity.

Epson salts baths are calming and some say they help with detoxing phenols from the body as well as other things like metals.



Wreck-Gar
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16 Aug 2011, 10:21 pm

Hey Tracker

Personally I'm a bit skeptical of many of the biomedical treatments out there...are you just going to write your chapter based on anectodal evidence or do you plan to quantify the information in some way? I think the "parental placebo effect" has a lot to do with the successes some parents see.



Tracker
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17 Aug 2011, 12:51 am

Wreck-Gar wrote:
Hey Tracker

Personally I'm a bit skeptical of many of the biomedical treatments out there...are you just going to write your chapter based on anectodal evidence or do you plan to quantify the information in some way? I think the "parental placebo effect" has a lot to do with the successes some parents see.


I plan to talk about biomedical in general. Including talking about the parental placebo affect. I will also talk about what biomedical stuff can help with. I.E. it can help to reduce indigestion problems, irritability, anxiety, etc., but it isn't suddenly going to make your child better at communicating. It could reduce the stress which allows for easier communication, but it isn't going to suddenly make him understand words that he didn't before.

I then plan to mention some common treatments, and the research regarding it (mostly what can be found on wikipedia, but I will check the sources). For example, you can look up things like clonidine or inositol on wikipedia, and there is plenty of evidence for successful treatment of anxiety and other such problems with minimal side effects. And for people who are looking for help in those areas with their child, I think a cheap over the counter supplement is a better place to start then prescription drugs.

Basically, I want to give a list of potential things that might work, how they can help, what the current research shows, and what potential problems they can be useful with. At which point I will say something along the lines of, "These supplements aren't a cure all, and some may not work for your child. But there is evidence via controlled medical trials which show some benefit for some people. If you are looking for help in these areas, put this on your 'worth trying for a week' list. In the worst case scenario, you'll waste a few bucks on a supplement that doesn't do anything."

I am also thinking of having a section on wasteful biomedical therapies such as chelation, and the like where I basically say, "Don't waste your money and risk your child".


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Wreck-Gar
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17 Aug 2011, 2:11 am

Tracker wrote:
I am also thinking of having a section on wasteful biomedical therapies such as chelation, and the like where I basically say, "Don't waste your money and risk your child".


That might be a good idea...especially if something might be potentially harmful.

I saw a guy on another forum the other day asking if hypnosis would be a good autism treatment!

Anyway we have not tried any biomedical treatments for my son so I can't really help.



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26 Aug 2011, 5:24 pm

Anybody else have anything to add?

I know there are more people then this who have tried something.


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PaintingDiva
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26 Aug 2011, 6:42 pm

My cousin gives her daughter, yes another Aspie in the family, fish oil. She herself is a pediatrician, though she is not currently practicing medicine.

I can ask my cousin if she thinks it makes a difference for her daughter and why she gives it to her. Her daughter starts college in a few weeks as a freshman. They chose a local private college that is about an hour's drive from their home.

All food supplements are a slippery slope to my mind because they are not FDA approved and there is a ton of snake oil out there being sold to desperate people.

Most doctors are very negative about vitamins and food supplements, they say you just have expensive pee.



aann
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27 Aug 2011, 12:29 pm

We use folic acid, enzymes for the intestine, and fish oil (when I remember). We avoid gluten, sugar, and artificial colors and preservatives. My son is no longer very argumentative, an absolutely huge diffrence.



aann
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27 Aug 2011, 12:29 pm

We use folic acid, enzymes for the intestine, and fish oil (when I remember). We avoid gluten, sugar, and artificial colors and preservatives. My son is no longer very argumentative, an absolutely huge diffrence.



DW_a_mom
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27 Aug 2011, 1:06 pm

Be sure to put a big CYA in that chapter, not a doctor, evolving area, serious concerns, mostly anecdotal, but want to address because logically there might be something real here, just can't be sure yet what, etc etc. I do like the approach you've suggested so far.

My more or less NT daughter started poaching the fish oil I had bought for myself and she is convinced it has helped her a lot. She's my super mood one.

My son avoids soy, which we got to by accident. There are probably more foods he should eliminate but he doesn't want to look at this issue, and without his cooperation I figure diet restrictions would fail.

In this area is also the question of pro-biotics, how we're killing off the healthy micro-organisms that actually are needed in our systems. They are just getting into understanding the relationships here. I'm suspect it is all connected, that these man induced changes are connected to so many people having trouble with food.


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Tracker
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27 Aug 2011, 8:27 pm

Don't mind me, just consolidating posts into one thread so I can find them easier for future reference:

http://www.wrongplanet.net/postt160523.html
http://www.wrongplanet.net/postt93083.html
http://www.wrongplanet.net/postt160525.html
http://www.wrongplanet.net/postt172834.html
http://www.wrongplanet.net/postt146058.html
http://www.wrongplanet.net/postt99623.html
http://www.wrongplanet.net/postt121929.html
http://www.wrongplanet.net/postt151129.html
Do research on zinc.

Also! My 1000th post is coming up soon. Make some suggestions about what I should do for my 1000th post.


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momsparky
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27 Aug 2011, 11:00 pm

Tracker, at our psychiatrist's advice, we all started taking fish oil and vitamin B supplements (particularly B-12, whose benefits I noticed in myself) and they seem to have helped. None of us have very good executive function skills, and we sometimes forget for a day or two. I notice that skipping a day doesn't seem to matter, but if we go for more than two days, we do all seem a bit (the difference is fairly slight) lethargic and fuzzy-headed.

I think Hippocrates is a good guide for all this stuff: vitamins and fish oil, taken as directed, at the very least they do no harm. While I do believe that many people on the spectrum have hypersensitive digestive systems along with hypersensitive everything else, the same can't be said for some of the more draconian diets that are recommended (I'm not describing anything I read here - I'm talking about the craziness that's out there on the internet.)



Tracker
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14 Sep 2011, 5:57 am

Just adding another post for future reference

http://www.wrongplanet.net/postt174235.html


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aann
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15 Sep 2011, 8:41 pm

My homeopath has plenty of suggestion but we have only tried a few. We are gluten free, and doing folic acid, a probiotic, and something for the intestines (I'll have to get the bottle some other time). We also do fish oil at times. My son's sleep problems aren't great enough to warrent melatonin quite yet. So far we have seen good progress but there is room for more.

My son's therapist suggests doing the GAAPs diet. Since being gluten free has really helped, I assume more gut healing would be good as well. I know my son has had Asperger symptoms from birth, although I didn't know about Aspergers. I don't assume he will be cured but he could do better.