Vitamin Therapy | Autism PDD

Hey there,

My son is almost 3 years old, ASD diagnosed at 2yrs and 4 months. Here is my story so far re supplements and chelation...(and sorry, it's gonna be long!!!)

I started my son on an OMEGA 3/evening primrose oil supplement which is called "EYE-Q" and was featured on one of the UK's morning breakfast programmes. He has now been on this supplement for over a year (5ml in his milk per day) and I can honestly say that after about 2-3 weeks on this oil, the changes were astounding! ESPECIALLY his eye contact.

This was a kid who NEVER looked at anyone, even us, his parents. NOW - he hardly looks away. It may be coincidence - but from what I've read on the EYE-Q website, it seem that many parents of autistic children have had the same results. So..here is the address if you are interested...I think it was invented in Ireland...www.equazen.com.

Apart from the eye contact, there definitely has been a fog lift from our son. He is so much more aware of the world around him now, and his place in it. This may be due to him maturing over the last 8 months, so I can't say for sure if it's been the oils.

Now onto vitamins.....

Our son is a VERY poor eater. In fact, this is probably the only kid in the world who will throw up at MacDonalds! No joke!!!!!! He eats rice cakes, gluten-free biscuits and a ton of soy milk. That's about it! He is incredibly healthy, however, if a little small for his age and has so much energy I can't believe it.

We put him on a GFCF diet about 6 months ago and haven't looked back. The only thing that was difficult was yoghurt, because it was his FAVOURITE all time food and we had to take it away. SOY yoghurt was tried once and then the couch wore it! However, our son's stomach used to be like a little pot-bellied pig and now it's flat. THAT is apparently a sign of gluten/casein intolerance. So, something good must be happening I'm sure. He has seemed so much happier and calmer since being on this diet too.

A couple of months ago, we visited a DAN doctor as we'd heard a lot about chelation etc. I know it's very expensive and we really couldn't afford it but thought it was worth a try. We are currently mid-testing and will have results re heavy metals etc in the next few weeks. I will keep you posted if you like.

Sorry, vitamins....we have recently started our boy on a complete multivitamin and iron supplement which is made by ROCHE and is called PENTA-VITE. It's for children aged 1-12. Well.....the changes in his apetite have been great. He still only eats "his" foods and will gag at anything new, but he's eating a ton more than he did and has even put on a little weight. Yeee haaaa!

So...please...make up your own mind about these therapies, and I can't really comment on the chelation/etc quite yet because we're only mid-process - but I CAN say that the oils have certainly helped our boy. You think about it - certainly when we were little, I really do remember having COD LIVER OIL given to me on a spoon by my mother, religiously, every night without fail....because it was good for us! (even though we GAGGED on it!) I tell you what - something has to be said for our mothers/grandmothers times...

Hope that's been of help! Sorry I've rambled on.

Take care and best of luck.

OK, here's my take on it, the chelation scares the crap out of me so we're not even thinking about it now but about the b12, we started the b12 over a month ago, the first week was brutal, he cried alot, to the point we're i considered stopping but sat and thought, if he's crying and saying "oh i'm so sad" what if he's finally acknowledging his feelings? so for about a month, i've noticed, he's playing alot more, going out of his way to bring others in to play with him, he's alot more verbal ect. no pleaee keep in mind that what works for one doesn't work for another. i give him the b12, in a liquid form in his oj in the morning. we ordered the super nu thera, and i would be interested to hear from parents who have tried and or using it, if you wouldn't mind. The b12 is water soluble, it doesn't build up over time and from what i've read and spoken to people, there are no known toxic levels of b12. please what ever you decide, please speak to a dr. I'm a super-nu-thera Mom! We started Luke on it just around the time that Andrew was born (so the end of June). We initially ordered the trial size to see if it had any effect. We first started DMG about a week before starting the super nu thera. I didn't see any changes with that, but the dose was fairly small, as we were building him up. The day we started him on the super nu thera ... BOOM! I cannot believe the difference! I know I wrote about how my aprents were so critical about Luke's progress while they were here during Andrew's birth, but that night -- my mom was RAVING about the incredible improvement in Luke's eye contact and sociability! And I hadn't told my parents that we'd started him on vitamin supplements. Could this have been a coincidence? Well, we ordered the larger bottles of DMG and super nu thera, but they didn't get here until after we'd run out of the trial size bottles. So Luke went 3 or 4 days without the vitamins. I swear to you ... the difference was astounding. he withdrew again, making less eye contact, seeking us out less often, and being less verbal. As soon as we got the vitamins ... he went back to an increase in same.

Mind you, Luke also has a poor appetite (well, by that I mean he doesn't eat fruits and vegetables, MUCH to my chagrin), so we feel like he needs extra vitamins anyway ... but I DO believe that they've helped.

Kellie

I just read a book on bio medical treatment for autistic children (a gift from my mom) and a waste of 22.00 anyhow she means well. In this book that is written by the DAN doctors it says that by giving your child high mega doses of certain vitamins such as B12 and cod liver oil and many others, that it will make there eye contact better and make the agression go away so on so forth. I am wondering has anyone tried this approach and if you have did you see a difference? I belive this treatment goes hand in hand with the GFCF diet and the chelation. Not to sure I could do all of that or afford to do it. Mostly wondering if giving extra vitamins and supplements do help with the focus and eye contact. Also isn't it supposed to be dangerous to give high mega doses of B12?? Just curious if any one else has tried it or knows about it.

Thanks ,

Nita

The spine and neck realignment is part of the Edgar Kayce method. All the chiropractor is doing is manipulating the bone and tissues into the correct form if they are misaligned. They also generally give you exercises to do. Some people it works with, others it don't.

Tammy

a few of questions about these vitamins...

is it ok to do the vitamin therapy without doing the GFCF diet? i tried the diet on my daughter once, for over a year, and she just got worse. i would like to try it again but i know it will be difficult so i would need a lot of time to prepare. plus, having to share a kitchen with others is a bad thing. they love their dairy.

which vitamins work best together? i have taken notes on all of the vitamins mentioned in this thread. i'm so curious as to what effect they would have on my daughter. i know i shouldnt give them all to her at once, but which ones should i try first?

how much of each vitamin do you give a child? i'd really be afraid of giving her too much. i'm setting up an appointment to talk to her doctor, and i will definitely mention all of this and get his OK on it before proceeding. he's an excellent doctor, i love him to death. he's been my daughter's doctor since the very day she was born. but he admits that he doesnt know much about autism so he kind of has the "well, you're her mom and you know more about autism than me, so whatever you think is best...." attitude.

how much do these vitamins cost? i'm on a very limited budget so i'd have to juggle some numbers every month to figure out how to afford them.

i'm just really interested in this. i had never really heard anything about vitamins before. my case manager called me yesterday and told me to set up an appointment with a chiropractor to put my daughter on vitamin therapy and to have her spine and neck re-aligned. i'm not going to do the spine and neck thing, as it makes me nervous and my mother says its painful, but the vitamins have caught my attention.

obviously the sesame street multivitamins arent enough! lol

we are just starting with cranio sacral manipulation, it's one of those therapies that they deem as a "quack" but for years they said the same thing about OT. we use massage therapy aswell, as far as the gfcf diets, you don't have to do both at the same time. we tried the diet and it was a nightmare, he eventually would only eat frenchfries and mind you, he was a good eater to begin with so we went back to our "normal " meals and he's doing just aswell.i guess i just got fed up by the dr saying how sorry he was for my son but not doing anything to help, so i found a new one, he seems to be on the same page as me, and i would check with your dr about the dosage, seeing as kids have different med issues and height and weights may vary. alot of my reading for the internet was found on www.autismresearchinstitute.com there is alot of research and info out there. be wary and always check with the doctor. i can't stress that enough.

i just called the clinic to make an appointment with her doctor. he's not available until august 30. *sigh* i have to wait a whole month before starting this. what a disappointment.

on the bright side, it gives me enough time to do my research!

Just curious if you guys did the Vitamin stuff and the GFCF stuff under a doctor's supervision or did you just try it on your own.

Everythime I mention anything "radical" to my son's dr's, therapists, etc they pretty much say it's a waste of time, or there's not enough research behind it.

I',m tempted to try on my own, but would be afraid of what dosage etc

The Autism Research Institute gives general guidelines about dosage as far as weight, but you're probably safer checking with a doctor. I have found, too, that many medical doctors pooh-pooh anything that doesn't involve them writing a prescription or that hasn't been backed by at least 20 yrs of research. Unfortunately, the research on vitamin therapy has only been around for maybe 10 yrs or so (begun by ARI). I'm an educated person and get quite angry when a doctor doesn't listen to my point of view or who condescendingly ignores my queries. I found a doctor who is willing to listen to me and supports my trying 'alternative' ways to treat Luke's symptoms.

By the way, funky ferris, if your son has eating issues like most kids on the spectrum, how could vitamin supplementation be considered radical? Maybe you should say that to his doctor.

Good luck in your decision making!
Kellie

We have just started doing the vitamins and have gradually been getting dd on teh gf/cf diet. We removed dairy 8 mos ago and my non-verbal dd started saying single words the next day. W/in 2 weeks she was talkin in a couple simple 2 word phrases.

I am part of a group of moms who are going to DAN docs or in the process of doing it. I can't do it now because we can't afford it, but I am hoping by the end of this year we will start. There are 2 ladies whose sons (5 and 6) have been on Chelation since late last year. They both said their sons responded to the treatments. They said that the vitamins and special diets helped make them more responsive to their surroundings (out of that 'fog'), but the Chelation apparently made them more socially involved in their surroundings. One of the women said her son was only talking in small phrases simply requesting his needs and giving simple responses. She can now have conversations w/ him about anything.

Obviously, everyone has their approaches, but just me meeting these group of women and their kids have made me want to at least give it a try.

Thanks alot for all of the input I am definetly gonna check out the super nu thera and DMG also the evening primrose supplement. I just didn't know if I wanted to try the GFCF diet he has some eating issues but they are improving somewhat. Also I have four kids so it would be pretty tough to keep that food away from him. He looooves dairy especially ice cream. Can these things be purchased at a vitamin store or do you order them online? He seems to like taking his daily vitamin so I hope I have luck with this. I also agree the chelation scares the heck out of me too!! Thanks alot for your responses.

Nita

My little guy (Jake- 26 months) doesnt have feeding issues per se. I mean he eats lots of different stuff. He works with a feeding therapists and is slowly trying new foods. He has more texture issues. I don't think he is vitamin deficient from what he is eating and I have no reason to believe that he is allergic to dairy or wheat. He eats, cheese, oatmeal, baby food fruits & meats so I'm pretty sure he's getting plenty of nutrition.

But when I read all the great testimonials about the GFCF diet and the B12 supplements and the Eye-Q stuff mentioned above it makes you wonder if its worth trying. I mean I'd love to see better eye contact like the person posting above about the EyeQ supplement, but did you start using that knowing that your kid had a vitamin deficiency or did you just take a chance?