Wednesday, August 05, 2009

"Radical" Autism Treatments - HBOT AND Stem Cell Treatment

They are not choices I would make for autism treatments for my son. HBOT and Stem Cell therapy for autism disorders are by my understanding both invasive treatments and both carry some risk to the extent at least that the full effects of these treatments on the neurological development of young children are essentially unknown at this point in time.

The bottom line for me is that neither HBOT nor Stem Cell treatments are considered to be evidence based effective autism treatments by any credible authority. Conor has received ABA; although not much during the prime 2-5 year age range due to lack of available services. ABA has helped Conor in a number of different areas but it is not a cure.

Dad: Radical Treatment Helping Son With Autism Recover is the story of an "Autism Dad" who took a different approach than I have taken. Instead of going the evidence based approach as I have done in seeking ABA intervention for Conor Daniel Faiella has sought, at considerable expense, HBOT, and more recently Stem Cell treatment, for his autistic son Matthew. Daniel's anecdotal evidence is that his son has shown dramatic improvement going from 2 word sentences to complete sentences.

Although I would not seek an invasive, unproven autism treatment for my son, I hope that the procedures being followed by the Faiella family are done safely. It would be helpful if the procedures and results of the treatments are recorded for study purposes. HBOT and Stem Cell Treatment should also be the subject of study by the appropriate research authorities since the treatments are in fact being provided to autistic children anyway.

I hope that young Matthew Faiella suffers no harm and that he continues to make progress and fully recovers from his autism disorder. In a world where parents are increasingly under attack for trying to help their autistic children I thank the Faiella family for having the courage to share their story with all of us.

The Faiella family has a blog detailing their experiences with various treatments: Mild Hyperbaric Oxygen, Adult Stem Cell Therapy, & Cranial Electrical Stimulation.





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6 comments:

navywifeandmom said...

We will be doing a trial of HBOT in about two weeks. It will be interesting to see if anything comes of it.

I don't know how we would continue, though, if my daughter responds positively as it is more expensive than some of the other "alternative therapies".

My daughter's respite provider personally knows some families who are doing HBOT and swear by it, but like anything, it doesn't work for everyone.

Stem cells - Not something I would consider at this point due to the expense and lack of evidence that it would help my daughter.

If they would study the children who DO respond to stem cells versus the ones who do not to find out WHY children like Matthew respond, what it is about their individual makeup that makes them responders and they came up with some sort of test to see if a child will or will not respond, then I would consider it. But I'm not willing to risk 15 thousand bucks on something that may not do a thing. That's a lot of money to put on the line for something experimental.

Roger Kulp said...

Two articles to read.

http://www.usautism.org/PDF_files_newsletters/4_neubrander_jim.pdf


"HBOT is not the magic bullet that we are all looking for, a bullet that does not exist.However, HBOT has the potential to be a powerful adjunct to all the other therapies that a child is using."

On page 3 of Dr.Neubrander's talk,he goes into some detail about mitochondrial and immune improvement seen from HBOT. Notice most of the children Dr.Neubrander mentions have both autism,and medical issues.Immune,bowel, endocrine,etc.

http://www.hbotnm.com/articles/RossignolHBOTandautism.pdf (Elsevier article.)

Notice the common factor in most of the cases,in both articles,is inflammation.Immune,or endocrine disease,that contributes to the severity of the autism.While this may not be a problem with Conor,it is a big one for a lot of people on the spectrum.Ideally a child with both types of problems,should have both ABA and HBOT/biomed.Where it gets questionable,is when you have parents who do all this stuff for a child with "uncomplicated" autism, or even Asperger's.

A Family said...

My son has inflammation of his GI, etc. He gets sick from eating like the rest of us do. He does HARD chamber, not mild or soft. He does HBOT, and we have seen great improvements from it. When done as it should be, there are no risks. A Dr. there, diving with EMT, medical clearance, etc... Expenive though and time consuming, but we are doing 80 dives a year. Does everyone see such great results as my son with HBOT? NO. My son's GI system is a complete mess, as well as his immune system. Several metabolic disorders. I would chose ABA OVER HBOT though, if I had to chose one.

Marty said...

we just got back from doing an adult stem cell transplant with our son. We also have over 700 hours in our mild hyperbaric oxygen chamber, and it has been our best form of treatment yet. Our son was not talking before we started mild hbot. Now, we are waiting for some results with the adult stem cells. It takes 6 weeks to 6 months before results can be seen. Our biggest concern was safety, and we have been assured of no negative results with adult stem cells. There have been over 700 trials in the US with adult stem cells. We are seeing lots of changes in our son, already. To follow his progress, read our blog at www.kensjourneytorecovery.blogspot.com

pdbrit said...

I know the Faiella's personally and I too have done hbot with some degree of positive response and we have just returned from having a stem cell treatment. There seems to be an assumption that we are pulling $15 K out of our Swiss bank accounts and heading off to get these treatments. That couldn't be farther from the truth. I have personally spent a year and a half researching these treatments, trying to understand why they work for our kids and looking at my son's personal fight with autism by using thousands of dollars worth of labs, brain spect scans, etc, to determine if he would be a responder to stem cell therapy. It has been barely a month since our return and we are already seeing the positive results from the treatment. I thank God for the Faiella's for letting us "stalk" their blog and then have then open to respond to us personally. They have no reason to help anyone, especially when so much ugly is directed at them for trying to help their son. I think people who just do ABA and a couple of other things are taking a huge risk too - that their kids will only get a little bit better when if trying other things, they would get a lot better. EVERYTHING we do in autism is "alternative" medicine. Ask any allopathic MD and they will say we are nuts. I know what my labs say, I know my sons deficits. We are systematically tracking his progress the best way we know how to determine a second trip. And nothing we do in the autism world works for every kid. Every treatment is a gamble. Let's not cast any stones on any parent who is advocating the best way they know how for their child.

Moose Mom said...

I waited two years on the fence for HBOT. We did a 40 dive trial this summer with my 5 year old son. It gave him a big boost this fall: started writing, improved other fine motor skills like cutting, increased sentence length and variety, increased social interaction. HBOT, along with a comprehensive biomedical approach (diet, nutrition, heavy metal detox, addressing gut issues) and a strong ABA program are recovering our child. Once you understand the brain inflammation involved in autism, you can understand why HBOT not only helps autism, but also other inflammatory brain injuries like stroke, CP, & compression sickness from scuba diving. HBOT has been recognized for over 20 years as an effective treatment, and even covered by insurance for these other injuries.