YES, Chelation and other biomed can be dangerous...even craniol sacral if not done by the right person.
It is very important that you research who you are seeking treatment from and what the treatment is before having it administered to your children.
As Fred said, many DAN docs use DMSA...but there is a growing number who are using other chelating agents. Each chelating agent (DMSA -oral, suppositories, trandermal; CAEDTA - supps/ IV; DMPS - supps/ IV; DMPS/CaEDTA - IV, etc) works differently in how it binds w/ certain metals to extract it from the body. DMSA doesn't cross the blood-brain barrier, that we are aware of, but there is another chelating agent that does. CAEDTA is really good for highly lead toxic kids. You just have to do your research and have a doctor who has done their research. I know that the use of other chelating agents has really taken off over the past few years the more they have learned.
In my personal experience w/ my 2 kids, chelation and craniol sacral has helped. We did craniol sacral a few years ago before we started biomed and saw really great improvements, especially in their sensory issues. Some good websites to start off with are www.autism.com, www.generationrescue.org, www.tacanow.com, www.nationalautismassociation.org, some yahoo groups: cheatingkids2, autisminfo, biomedheads, etc.
in a word, YES it CAN be dangerous. Of course there are some bio med
[QUOTE=fred]As far as your friend - many/most autistic kids make huge gains whether they're 'on' something or not. I could make a 'before and after' video as convincing as any of the testimonials that you can find on the cure sites. I'm considering it, actually (and no, my kids aren't cured).[/QUOTE]
EXCELLENT IDEA!!! How come nobody has before??
[OFF TOPIC]
I was sort of considering this as a resource for parents who have newly diagnosed kids. I think if parents saw the gains that autistic children can and do make without heroic levels of intervention, it might give some some peace and would be less likely to panic and seek out 'alternative' treatments that may do more harm than good (if not to the kid's health, then to their finances or to their psychology).
The idea occurred to me as I was watching the 'recovered or nearly recovered' kids testimonials on Dr. Neubrander's site, and noting that none of the kids that were near the same age as the girls seemed any more 'recovered' then they do. I also noted that most of the testimonials included large lapses of time - 18 months, 2 years, etc. In other words, many of these recovery stories paralleled my own experiences in observing my own daughter's development over a significant period of time.
I have an ethical concern and a privacy concern, however.
The ethical concern is that I might influence a parent from seeking some treatment or therapy that might actually have been beneficial. Obviously, I'm skeptical of most treatments for autism, but I'm not so arrogant as to assume that I know that they don't work - and I'm as susceptible to the anecdotes as anyone else - maybe they're on to something? Who am I to say. I wouldn't want to influence a parents decision on how to treat their child.
The privacy concern goes without saying.
I think from this forum alone, though, we could put together quite a few 'testimonials' to the amazing, curative power of time.
FULL DISCLOSURE: I do do biomed: fish oil and Flintstones.
[/OFF TOPIC]
Fred -- I just read the intro to "Reasonable People," and it is a lovely justification and contemplation of the ethics of presenting an individual story of your child. I highly recommend it if you have not read it. Very erudite.
The book itself has its good and bad points ... so far, it is very emotionally candid but sometimes that makes it seem a bit arrogant.
Anyhow ... confidentiality aside, I cannot see how it might be unethical, if you present it as a case study, and are cautious not to generalize too much!
Fred
I really like the idea as well -
I have frequently felt that I am denying my son something by not doing the DAN stuff - It seems when I hear anything working for a parents then I feel like I should tryi it out 0- In fact I remember one of the moms posting about a no milk cure and many of us were tempted to try CF- all of us really do want to help our kids
It would be very helpful to see some parents who succeded trying the more mainstream stuff and common sense parenting
First let me start by saying I have never ruled anything out. I also have not tried much of the biomed type of treatments.
I have to agree with Fred. Read my post about my son's scout experience. I have used the treatment of just trying what I thought was best for my son and following my gut. He did not have any of the special sensory treatments that cost a fortune but as I read about them I realized I did them all along. Just following my instincts on how to help him become more sensory involved.
Chelation is just cleansing, but anything done to aggressively can cause harm. Just follow your instincts. If they are telling you to not do it then don't!
We did the fish oil for Sarah's delayed myelination and only after reading it for improving speech did we feel pretty good about it. The other vitamins we did was DMG, and supernuthera and enzymes..GFCF diet..but I could never swear by them as the reasons she improved so much..I do know in my heart that the ABA and speech was essential for her..especially ABA and no way would she be where she is right now without it.
I was too scared to do the chelation or secretin..even the b12 shots were too much for me to do to her and I am a nurse. I felt she was suffering enough and the fact I would need to sign a waver to exempt the doc from any harm that may come to her caused me to change my mind real quick..I didnt want her to be a guinea pig..I had enough guilt as it was!
If I had to put money into one thing it would be 1:1 quality engagement as much as you can either ABA, RDI or floortime..I think that is the key to helping them improve more than the biomedical stuff..some kids do have miracles from being on them..we were not one of those people but the idea that it would help her was very powerful and hard to resist trying it. No regrets:)
Fred is right...there is a HUGE amount of propaganda pro and con on almost every treatment.I did cranial sacral therapy with my oldest son when he was in first grade. I saw some improvement, but nothing dramatic. I was actually referred to the clinic by our Children's Hospital.
I've also tried it with my youngest son. He did stop banging his head into soft furniture, but he didn't enjoy having it done. He hasn't had a session in about 3 months and all is fine. With what I'm now hearing, I don't know if I'll do it anymore. The only thing he has made HUGE gains with is VB/ABA. I think we are going to stick with that.
One of the moms who I met at the ASA society here swears by Chelation and by Cranio Sac therapy and Mega Vitamins - her son has made HUGE amounts of progress with DAN interventions
I dont want any invasive treatments on R unless absolutely necessary so I put these treatments on the " dont know much about them but dont want to try them"
I came upon this story
http://www.knoxnews.com/news/2007/jul/10/doctor-sued-in-auti stic-boys-death/
and was shocked - Is this true ?
I am not looking to start a debate - I know we all want the best for our kids but I was curious about this issue
There is a HUGE amount of debate on this topic. I, personally, would not do chelation with Payne because there is a HUGE risk. I have heard of a lot of people dying while trying to do this. Chelation was originally used for heart patients.That is exactly how I feel about it Payne's mom
I was also wondering what the other side of the story is- if there is one - like was something wrong done during this particular episode
Kajoli, yes, it's true. However, the kind of chelation that that doctor was doing is not typical. Most DAN! doctors, from what I understand, use DMSA, not IV-EDTA, so 'death' is less likely to happen. The form of EDTA that he used didn't have a calcium additive (the cause of death, iirc, was heart failure because all of the calcium was pulled out of him) and that that might have been a 'mistake' - oops.
Thing that's more scary to me is that the doctor in question is a DAN! in (apparently) good standing:
http://www.autism.com/ari/ari-lists/us/Roy_Kerry,_M.D..html
As far as your friend - many/most autistic kids make huge gains whether they're 'on' something or not. I could make a 'before and after' video as convincing as any of the testimonials that you can find on the cure sites. I'm considering it, actually (and no, my kids aren't cured).