The Magic Supplement?
January 14, 2008 by Kristina Chew, PhD
Filed under Health
The January 13th Shreveport Times describes the 13 supplements that Jennifer Blaton gives to her 7-year-old autistic daughter, Darbee, as a “cocktail.” Once a week a chelating agent is added, and Darbee gets B12 shots twice a week, and goes to a Defeat Autism Now! practitioner in Baton Rouge once a month for intravenous chelation. Darbee, her mother notes, still does not talk and is “‘on the honor roll, she reads, writes, does math, but her speech is just not there…….She knows what she wants to say, her wires just get crossed.’” Barton follows the DAN! protocol, which is a sort of manual for using biomedical interventions for autistic children. Many of the treatments included in the DAN! protocol are experimental and draw on alternative medicine; some, including chelation, are potentially dangerous. While 13 supplements might sound like quite a “cocktail,” I know of many parents who give their children just as many supplements, and also use IVIG (Intravenous Immunoglobulin Therapy) and hyperbaric oxygen chambers, and who speak of “we’re going a chelation” as if this is a routine occurrence (because it is).
I just wonder, why do some attribute their child’s progress most of all—if not solely—-to the biomedical treatments, while school is only referred to in passing?
Perhaps it’s education that is the secret mega (and essential) supplement.
I’ve heard of people who were very sick doing chelation when they can’t figure out why they’re so ill… they think it’s due to “heavy metals” in your system or something. I actually know someone who did this and got supplements, etc. and she GOT BETTER. Mind you, she also started taking better care of herself and taking a little time off from a stressful job at the same time. If I remember right you’re supposed to take a lot of zinc when you do this for some reason. It seemed like a lot of money for unproven benefit, kinda like the stroke victim I know who went to the hospital to sit in an oxygen tank or something. She never DID learn to speak more than a few words again. But people will shell out a lot of money for hope, you know. I’m poor enough that if it isn’t on my insurance plan, it probably won’t get tried LOL!
I am only speaking from my own experiences. It doesn’t matter how good or bad the educational services that are provided to you are if you are not physically, emotionally, and psychologically able to gain from them. You cannot learn if you are not healthy and not offered a challenging educational curriculum. Lacking health or educational challenges, reduces a better outcome for both of these.
The kid is on the honor roll.
other parents would be proud. Is being mute the issue or is the parents inability to see past what is in their interest?
i’m with the AS man. what stuck out for me about this was the long list of how well the child is doing but it seems as if that’s all dismissed because there is no speech. i can’t know what it’s like to have a non-verbal child but i DO know that speech does not equal communication. and for me, communication is FAR more important than how many words my child knows.
Kai started enzyme therapy a couple of months ago, and his teachers and therapists all noticed a change in his attention span and focus. I attribute almost all of his gains to the hard work we all do to educate him, but the enzymes seem to make the educational techniques and therapies more effective.
For us, a combination of supplements and training seem to be the ideal, but I really doubt that we would see these great results if it weren’t for his wonderful teachers.
I have no interest in chelation, but some of the DAN protocols seem to be quite sensible. I think that for many of our kids, it’s all about finding a balance of nutrition, supplementation and education. Unfortunately, since their needs are so individual, it’s hard to know where to begin.
“…as if this is a routine occurrence (because it is).”
It may be routine, but it appears to be far from the norm still. A recent survey showed that about 10% of families had performed chelation on their autistic child. Of those about 1/2 had quit. This percentage is lower for Asperger’s or PDD kids.
“Parental reports on the use of treatments and therapies for children with autism spectrum disorders”
I’d like to say “only 10%” instead of 10%, but even 10% is too high given the lack of a mercury/autism link.
Matt
Mercury is not the only environmental toxin that is removed by chelation.
Our vitamin “therapy” for our daughter consists of two color-matched gummy bears each of vitamin C/echinacea, calcium, and multi-vitamin. Along with a varied diet, it make us parents feel better about letting her loose in the germ farm that is high school.
“Perhaps it’s education that is the secret mega (and essential) supplement.”
THANK YOU (!!!!) for recognizing what is absolutely and without doubt the most essential key to enabling our kids’ success!
The reason for giving credit (at least partial) to the biomedical is simple, using both together can get better results.
To use an analogy, if you are traveling down the road but the road is blocked, you will be slowed down while you take the time to climb over the roadblock or backtrack to another road. This would be education alone.
If however you take the time to send a crew ahead to clear the road your progress will be much faster. This is assuming that you can see the fact that the road is blocked and have the proper equipment for removing it.
Matt – you said :
“A recent survey showed that about 10% of families had performed chelation on their autistic child.”
I would be interested in reading that study, do you have a reference for it?
Well said, Kyra.
I’m not into doing ANYTHING to my children, supplements or otherwise, unless I have some awareness of the risk-benefit outcomes and efficacy, neither of which can be determined accurately based on anecdotal information.
Sounds like this child is doing better then most “NT” kids I know.
In my mind, I really don’t equate dietary supplements with dangerous chelation. Yes, DAN doctors use both, but foregoing all supplements just because some people who advocate for them also advocate for something silly seems extreme. My son has an extremely limited diet (he throws up all but about a dozen foods), so I have educated myself about nutrition and carefully chosen some supplements for him, including a multivitamin, a cod liver oil supplement, an anti-oxidant mixture, and soluble fiber pills. No, I’m not “curing” autism by doing this, I’m just trying to keep him healthy!
Eleanor, for very similar reasons we have done the same for our kids and especially for our youngest who simply will not even touch most foods. We’re trying to make sure he gets the required nutrition daily. We also give flaxseed oil, which we began when our oldest had GI retention problems because of anxiety. Those are long gone.
Yes! As an occupational therapist who works with kids with Autism, and a mom of 2 boys on the spectrum (one very mild, the other severely delayed) I often notice that the Therapy/ists NEVER get any mention, even when they have been working with children for years and seeing changes, albiet slow and steady. Nope, it’s always the vitamins or the chelation or the magic pill that doesn it. Not the countless hours of work that the child and his team at school, therapy, home, etc has put in. Most of the time I just laugh, but it’s no joke how hard my guys work, in addition to the other things we try.
“. . . why do some attribute their child’s progress most of all — if not solely — to the biomedical treatments . . .”
I’m a little surprised by that. As the article you’re citing notes:
“Most parents using the DAN protocol are still taking advantage of thesetraditional therapies. The DAN protocol even encourages their continuation.”
Everyone — not some, but EVERYONE –I know who practices biomedical intervention also utilizes educational therapies, speech therapies, and sometimes behavioral therapies. Indeed, most of us are more apt than others to fight our schools to get those services. I can’t say that I speak for everyone, but again I’m relying on the discussions I have with other parents. Everyone I know sees biomedical as being a big part of the solution, but nobody thinks it will do it all by itself.
“nobody thinks it will do it all by itself.?
*cough*
Nobody? I beg to differ.
@Wade—Thanks for pointing that out. What I’ve noticed, and particularly from personal communications with parents, is a tendency to emphasize progress in a child to the biomedical treatments, while not acknowledging educational therapies (good old-fashioned schooling, speech therapy, etc.). Educators have also noted frustration when a student is just not learning something and they are told that a parent is planning to try some new biomedical treatment—and the educator perhaps feels that it’s a change in teaching methods, or goals, or material to be learned, that would be helpful.
Of course, I’m only going by what Jennifer Blaton said in the article; certainly, the reporter may have been told additional information and have chosen not to use it.
“Everyone — not some, but EVERYONE –I know who practices biomedical intervention also utilizes educational therapies, speech therapies, and sometimes behavioral therapies. Indeed, most of us are more apt than others to fight our schools to get those services.”
I am not sure I am reading this correctly, Wade. Are you really saying that alt biomed parents are “more apt” than those who are not doing alt biomed to fight for their kids rights; for their kids services; for their kids quality of education. Please tell me I simply misread what you wrote.
Kassiane:
As I said, I am referring only to those parents I know and talk to. None of them would dream of abandoning other interventions. I’m sure that there are those who think it’s ONLY the biomed, but if we use my own acquaintances — which is a pretty hefty number — as a representative sample, the number who rely on biomed and biomed alone must be relatively few.
Kristina:
Again, I can only go by the discussions among the dozens of families I’ve come to know. Most of us do believe that the biomedical interventions have played a large role — and perhaps the key role — in the dramatic improvement we have seen. If nothing else, the biomed makes progress more possible with other therapies. At the same time, none of us (and as ridiculous as I fell about constantly repeating myself, I now feel that I need to say it every time, by “us” I mean the dozens of biomed families I personally know) thinks we could do it with biomed alone.
As for the final comment, I did not mean to imply that non-biomed parents do not fight for their kids’ educational rights. Indeed, many have become forceful advocates as they should. But I have also seen some be sheep, willing to accept whatever bones the schools are willing to throw at them. the same can be said for some biomed parents, but my experience — and again, it’s only my observations of those I have come to know — is that the biomed parents have become a bit more inured to fighting. Still, I am willing to apologize for that part of my statement as it does not do justice to non-biomed parents who are fighting the good fight. I admit that my observations on that are not terribly complete and are based in large extent on meeting families at conferences such as Autism One, where attendees spend as much time learning how to fight for their kids as they do learning about the latest biomed advances.
@Wade, no apologies—-I probably owe more than a few! Certainly many of the most determined to get the best absolutely for their children parents that I’ve met have been willing to “do everything”: All kinds of educational and other therapies, and biomed. I was very struck when a very well-known autism professional here in NJ noted (during a presentation on older children and transitions) that she had too often found herself trying to explain that (in her view and in that of her staff) that a student was struggling with something because of their cognitive abilities or, too, the teaching methods; this professional felt some real frustrations at hearing parents tell her about some new remedy that would have some miraculous effect.
My main thought, and I think we agree on this, is that there’s always hope and we have to keep moving forward.
Agreed, Kristina. And I hope we can also agree that there is no one magic ingredient.
I still have hold out to for good teaching but I’m biased because that’s my profession……..
I’m right there with you.
Hello friends -
I personally know several children who have blossomed from non verbal to passing for normal without any education at all, but got bucketloads of biomed. Should we assume that some hidden education has been affecting them?
My son’s ABA checklist was a straight line in at least four categories until precisely two weeks after we chelated him the first time, at which point there was a sudden, and difficult to misinterpret spike in skills acquired. The therapists were working hard with him, for months and months, but we should believe maybe he just happened to acquire skills once we started chelating? The therapists were intentionally blinded to the treatment, and even if they weren’t, ABA lives and dies by the data, what possible reason could they have to forge bogus data? [Not to mention my wife and I saw gains in all areas outside of the therapy room as well.]
Education is important, but only if your body is able to let you learn; that is what biomedical is for.
Take care!
- pD
Once again, I’ll emphasize education — which we all are in need of (I certainly am) throughout our lives.
I would say both education and biomed worked together as a team. My boy started his ST, OT, MT when he was two, he improved but very slow. When we started biomed at three, plus the ABA, he improved tremendously. Being “cured” is still far away, but he is a much happier boy… that’s all we want to see.
“I personally know several children who have blossomed from non verbal to passing for normal without any education at all, but got bucketloads of biomed.”
—————————————-
That is a message that I think that one has to tread carefully with…I was a member of an organization whose mission was early education that tanked under the above mindset because of the assurances of some overzealous true believers who preached that learning was impossible without “healing the gut” or “getting the poison out”, therefore, the education piece was tangential. Fast forward 2 years. Their kids are still on biomed…and still have autism.
Based on your post earlier, I understand that you are probably doing ABA or some other in addition, but there’s a lot of dependencies in there, more than I would be comfortable in discounting the value of early educational intervention.
First of all, since when do sheep eat bones? Whatever. My experience has not been what is described here, and in my mind, descriptions such as these simply serve to drive a wedge into a false divide and widen the unnecessary abyss.
Second of all, how is it that one goes along with NO education at all while still being old enough for biomed therapies? Just seems unlikely to me. Were they living inside a box?
I have watched my son flourish over the years. He went from a boy of slurred speech and few words to one that now can carry on a full conversation. He gets hung up on words and has to pace the house to get his thoughts together but he’s able to tell me the most fascinating things sometimes. All this he accomplished with years of therapy – speech and OT, and a team of teachers and paras, all of whom have dedicated themselves to making sure my son reaches his full potential. He also has the unconditional love from his family. This same love is apparent in all that work with him. It’s through this love and dedication that my son has achieved the successes he has. NONE of it has been gained by biomed treatments. I don’t do those and I never will. MY son has developed his skills at his own pace but he’s had help to encourage him along the way.
Because I see my son doing so well just from therapy, good education and love and support it’s hard for me to put stock in biomed. Parents want to use it to treat their children – go ahead. Who am I to tell them otherwise. Just don’t get offended when I say I don’t believe in them or won’t consider them. That’s my choice, just as a parent using them is theirs. Looking at my son, I know he’s gained everything he has by his own hard work and the dedication of those around him. This is all he needs, nothing more.
One thing I found interesting is the reactions I got from mothers of a support group I used to belong to. They were surprised when I told them all that my son has was gained on his own and with the help of therapy, good education and love and support from his family throughout the years. They seemed genuinely surprised and even a little dismayed when they found out we’ve never tried any biomed procedures. It was almost like they couldn’t believe a child could gain skills through time and patience and a great support and education system. It can happen. Is that such a hard thing to comprehend?
No. It’s the way it’s supposed to work, autism or not.
That’s what children usually do, grow new skills with time, love, and teaching, or even without those things.
Some people seem to think autistic children don’t develop (unless ). And anything you teach them and anything fun they do or any sport they attend, etc, is ‘treatment’ too, instead of what you’d call it for typical kids. That just gets really tiresome.
Of course, with the right assistance with things that are difficult for you, you’ll learn faster and probably a lot easier. For instance, I could have really used that help with riding my bicycle that Kristina posted about earlier. Would probably have cut the time in half that it took for me to learn to ride one now.
And if you’re actually allergic or sensitive to certain types of food, special diets will help you too. If you’re diet is not very varied naturally, then extra vitamins and such will help you. But there’s no reason to give those things to autistic children who show no signs of those particular allergies to ‘treat autism’. If you really think your child is allergic to something, you can have it tested. Same goes for heavy metal poisoning. (And I mean dependable tests, not the quack ones). If someone has ‘gut problems’ and you take measures to help that, then that is exactly what will happen: their gut problems will go away. If their ‘functioning’ improves afterwards, consider that it might just be a whole lot easier to do pretty much everything if you don’t have some other problem that you were previously constantly struggling with. Doesn’t mean that treatment ‘reduces autism’.
I personally know families that only did biomed treatments, because their school districts didn’t offer much. They decided to pay for biomed rather than speech or ABA out of pocket. So I disagree with Wade that every biomed family does both.
Emily – I agree, that is the way it’s supposed to be. But too many people want to think otherwise and it doesn’t matter to them what we think or say based on our experiences. I know those mothers didn’t like what I had to say and I quit attending the group shortly after. I didn’t feel welcome and I personally didn’t want to be around parents who couldn’t be more open-minded. I’m sure they thought they drove me away which is fine. I know I ruffled their feathers and they didn’t like it.
Norah – my son has done just that – develop – at his own pace, in his own way, and has benefitted from great therapy and education and a loving and supportive family. And he’s happy with all he has so far.