Replies to This Discussion

Permalink Reply by Rosemary LYNDALL WEMM on September 1, 2009 at 12:28am

I suggest you do some research first. While it the condition may very well exacerbate those with ADHD or on the autism spectrum, you may find that this amounts to 1 or 2 percent of the total. Unless you have some very clear reasons to suspect your child suffers from this particular complication the cost of assessing it may be prohibitive and probably not warranted.

Permalink Reply by Deirdre Billes on October 10, 2009 at 1:58pm

Jimmo,

My son is a child who presented with SI, seizures, and ASD symptoms. He has been on a GFCF diet and on a full range of supplements to help counteract his leaky gut syndrome, pyrrole disorder, high hystamine, and zinc deficiency and on oral chelation for his heavy metals.

Through Pfeiffer Centre, Chicago, (www.pfeiffercenter.org) we received a Doctors Data Comprehensive Parasitology Stool test. On the Microbiology Culture results under the heading dysbiotic flora, he tested positive 4+ for both Citrobacter Freundii and Klebsiella Pneumonia. He was given Bactrim as an antibiotic to resolve these issues and his follow up testing showed that both had completely left his system.

I can not tell you whether there was a remarkable difference in him once the Dysbiotic Flora issue was resolved as concurrently I had been giving him a range of supplements including Probiotics and Prebiotics.

I think the most significant change came after August when I started giving him Houston's Tri-enza, enzymes which deal with Casein, Gluten and Phenols. After a three week period of regression and intense emotions, he settled into a very happy, stable, boy - able to concentrate and really attempt to read, and he was finally able to ride his bike without training wheels or intense fear! This treatment has been followed by the best results I have seen in him to date. I do not know if the enzymes would have been effective if we had not resolved the dysbiotic flora first. I am confident the results are from a combination of supplements he is now receiving, the re-balancing of all his "way out of whack" mineral levels and the strict diet.

Try surfing around www.greatplainslaboratory.com/home/eng/stool.asp and the rest of their web site as Great Plains will allow patients to order tests and give results directly back to patients which is very good. Their price for this test is currently listed at $330 for cash paying patients.

As for insurance, most of the bio-medical approach that I have done with my son is not covered. It has been an expensive few years, but the average person who meets him today would not conclude he was ASD, he has come a long way.

Another great resource has been Dr. Woeller from Still Point Center. www.autismactionplan.org

Good Luck.

Deirdre

Permalink Reply by Jim Mo. on October 11, 2009 at 1:37pm

Thank you, Deirdre. This is very helpful information.

Permalink Reply by Rosemary LYNDALL WEMM on October 11, 2009 at 1:50pm

I am skeptical. It is hard to separate out the effects of ordinary brain and body development.

You mention chilation for heavy metals. Unless a person is has clear signs of high levels of toxicity this procedure is more dangerous than useful. For starters it breaches the blood-brain barrier. Whatever metals were stored in the body outside the brain (everyone has some of these because we are all exposed to them through normal environmental debris) is then shunted through the brain. Kids can die from this procedure. Do some research on medical sites, not woo sites.

Permalink Reply by Deirdre Billes on October 14, 2009 at 2:48pm

Agreed. Chelation is not something to entertain lightly.

When Sam started to have seizures at age 4, I asked his neurologist to do a heavy metal scan. I had done some reading and wanted to know why he was seizing. HMs was just one possibility I wanted to eliminate from a long list. He also had an MRI and has had several sessions hooked up to Brain monitoring devices, both while awake and asleep - which was a terrifying thing to watch and another story all together.

The first heavy metals test he received was a blood scan. This showed some high results but within the "reference range". I did not think it was anything to worry about as the Neurologist was calm about the results. I simply cut back on Sam's fish intake as Mercury was among the highest element.

Sam had already been diagnosed with SI, ADHD, had had Sleep apnea leading to a tonsil-ectomy and an adnoid-ectomy and had never actually had a complete nights sleep at this point - by then age 5. Sam had a few other symptoms that I was very concerned about and wanted to know more - for example his finger nails constantly flaked off and I have yet to cut his toe nails - he is 6 years old. They just don't grow. That is why I pursued Pfeiffer Centre - I wanted a full analysis of his body - I needed to know what his body mineral / elemental balance was. He ate fantastic food - always as much organic as available and a wide variety since adoption at age 1. But it appeared he was not absorbing this expensive food i was putting into him.

SO Pfeiffer ran a very wide spectrum of tests, hair, blood, urine, fecal for just about everything you could imagine. His hair test was for "Potentially Toxic Elements and Essential and Other Elements" and the results showed his levels were OFF the Charts - lots of red zone scores.

It turns out that a blood test is only indicative of recent exposure to HM's. Hair and Urine tests are far more accurate at showing stored cell levels of HMs.

At this point I sought the advice of Dr. Woeller in California as he works with Autistic children and has done chelation with small children. Pfeiffer Centre is strong on the supplemental - bio medical approach, But i felt I needed more medical advice. At that time I felt that if this toxic stuff was causing Sam's seizures I needed to get it out of him asap.

Oral Chelation is far less traumatic than i.v. I would not entertain chelation by i.v. Neither DMSA nor DMPS which are the most common oral chelators, will breach the blood brain barrier - only ALA will do that - and to some extent cilantro does (Sounds a bit hokey, but apparently that herb gives a good "brain wash".) I will look to using ALA once his HM levels are down lower and the body elemental levels are more in balance.

His first test he scored a total toxic representation of 97% after 3 months of oral chelation that score was reduced to 70%.

Sam is a pin cushion, we monitored his blood and urine and stool for any signs of kidney or liver stress during this process and also ran several other tests to see how the other supplement treatments he was on were affecting his body balances.

I will re-test his levels and consider whether to start Sam on another round of Chelation in December, 3 days on, 11 days off few a few months, again with constant monitoring.

This is not a quick fix, it is a "slow and steady" wins the race approach. He is a sponge for environmental toxins. I had initially hoped to "get the stuff out" and be done with it but I no longer have that view. Sam's supplements help a great deal to push out and replace the metals, so it is a combination of approaches, with slow progression resulting in incremental, but visible results.

Where this toxic stuff comes from I can not begin to guess. I would like to say he was born with it, or collected this stuff in the Republic of Georgia. However, when I tested myself I had similar levels, proportionate to my son. So we are now both doing oral chelation! (Yes - i had our water independently tested as did a neighbor a few months later- that is not the source.)

I think in Sam's case the decision to use chelation along with the extensive supplements that he was prescribed was the right one. Both the Pfeiffer Center and Dr. Woeller evaluate each other's programmes and test results as two parts of a team. When one suggests an alternative I discuss it with the other. I make sure both are fully aware of everything I am doing with Sam. As a further backup, I have given all this data to his regular pediatrician here at home. She is monitoring his progress with keen interest as well. She has been impressed with his improvements to date.

This approach is not jumping on a band wagon. I am not just following some cute web site. Chelation is certainly not to be done without proper research and medical advice but it is a tool to use if a child is not able to flush out and regulate their own system. Apparently that is not uncommon with ASD kids.

Permalink Reply by Rosemary LYNDALL WEMM on October 14, 2009 at 10:07pm

I think you, along with a lot of other Americans, have been duped. Take a look at the following sites. This is just a very small collection of what is available. Just about ever medical board in the world has issued statements opposing the treatment.

http://www.skepdic.com/chelate.html

http://stanford.wellsphere.com/heart-health-article/death-to-chelat...

http://findarticles.com/p/articles/mi_m1200/is_v127/ai_3670325/

http://books.google.com/books?id=3LlejKEaqtoC&pg=PA229&lpg=...

http://www.sciencebasedmedicine.org/?p=118

Permalink Reply by Rosemary LYNDALL WEMM on October 14, 2009 at 10:09pm

The best article for non-experts is probably this one.

http://www.quackwatch.com/01QuackeryRelatedTopics/chelation.html

Permalink Reply by Rosemary LYNDALL WEMM on October 14, 2009 at 10:14pm

A quote worth considering:

"The National Council Against Health Fraud believes that chelation therapy is unethical and should be banned and that chelation therapy of autistic children should be considered child abuse."