Chelation recommendations, anyone?

January 14, 2010

Hey guys. I got 's toxic metals testing results back a few days ago, and

while I wait for anyone at Dr. Rao's office to call me back and help me decipher

them (insert groan here), I thought I'd better go ahead and gather some

information on chelation.

Here's our current situation. My son turned 2 on Halloween. He had a

huge set of losses in June, and it took me months to convince anyone that we

were dealing with autism. I finally did back in September, and is now

getting 15 hours a week of ABA therapy at the Brent Woodall Foundation, an hour

of O/T and an hour of P/T a week (to address the sensory issues he's had since

he was an infant), and he'll start 10 hours of Speech (which I think utilizes a

child-led, floortime model) at UT Dallas' Callier Center (Preverbal Program) on

Tuesday.

Once I felt as though I had gotten him into a significant amount of weekly

traditional therapy, I met with Dr. Rao, and started with some blood and urine

tests. Surprisingly, the only tests results we have back are from France.

Because we had a bit of an issue with a grab bag of supplements put in my

husband's hands there at the office, I'm not inclined to look to them for

supplement advice. He did have Mike do a Methyl B 12 shot there, and I'm

interested in learning more about that, but I'd like to see some sort of proof

that 's deficient in that area before I just start injecting him willy

nilly. We're waiting on results for yeast as well as food allergy testing, and

we're starting to remove gluten from 's diet, just in case we need to do

a gluten free diet.

From what I've gathered in the past few months, there seem to be two camps (so

sad that there seem to be two camps with regards to EVERYTHING dealing with

autism) on chelation. There's the camp that says it's dangerous and that you

shouldn't do it (and that the doctors who do it/recommend it are quacks, etc),

and then there's the camp that has tried it with their children with some amount

to a good amount of success. If there's a third camp out there who's tried it

and has seen terrible side effects for their children, I have yet to find it.

Maybe I just haven't looked in the right place. I have absolutely not made up my

mind to do this, but I am looking for recommendations FROM THOSE WHO'VE TRIED

IT. All of the rock throwing I've seen (not in this particular group, but from

nearly all autism groups) is really wearing me down, and I just want to get real

commentary from people with actual experience with chelation.

We are quite short on cash, and I'd prefer to try something natural, if at all

possible. I'd prefer to work under a doctor's care, of course, but I'd like to

move away from doctors who seem to be in it for the payoff.

I've heard from a friend of a friend that there's a solution that you can mix in

the bath. Solutions that I'd have to put in food or juice would be problematic,

because my son has sensory issues that keep him from eating wet/slimy/mushy

foods. He also only drinks water, so masking anything in his drinks might be

difficult as well.

Ok, I'm up for hearing suggestions. If you've had a negative experience with

chelation, of course, I'd like to hear that too. Doctors, methods, side

effects...I'm interested in hearing it all.

Thanks!

Serena

January 14, 2010

Hi Serena,It's Haven. It took us years before we could do IV chelation. Chelation, due to the type of drugs used, can deplete neutrophils (a type of white blood cell). In fact, neutrophils are the most abundant white blood cell and they are the most important. Neutrophils are the first line of defense, attacking invaders in the bloodstream.

Neutrophils should account for 50-70% of all leukocytes(white blood cells). If the total is higher, it means there is an acute infection in the body, say, such as appendicitis. If the count is lower, it generally means that there is a viral infection. These little guys are important stuff.

That being said, you mentioned the vitamin B12 injections. Vitamin B12 deficiency can cause neutropenia (very low neutrophil count). Our son was low, so we did methocobalimin injections for a while. Our son had failed to gain weight for almost two years. The shots helped him, but after a while, they caused excessive hunger and hyperactivity. B12 is in some respects, Nature's own form of speed. The benefits of these shots can be great! More energy! Yea! But again the drawback is increased appetite and weight gain.

Our ability to absorb and use B12 weakens as we age, so many middle-aged persons often benefit by injections. Dr. Rao may have prescribed these because: your child's tests show a deficiency, many children with autism need more methyl molecules to help their detoxification systems, in order to build up and protect his neutrophils during chelation, his neutrophil count is already on the low side, or maybe some other reason. Ask Dr. Rao why to be sure.

Now, about chelation. You said a test result came back from France. This may be the urinary porphyrins test which can show how high your child is in mercury, lead, and other toxic metals. If he is high, chelation can extract these harmful metals from his body.

However, chelation is NOT to be taken lightly. It took us many years to get the neutrophil count up and to come to this decision, and it was not without a lot of talking to other parents, researching, and soul searching. We tried milder forms over the years (oral, transdermal, suppository), but they did very little to get much out. IV chelation got a lot of mercury and lead out of my son's body, and we saw a lot of improvement. I don't regret doing it, BUT every child is different. After seven months of chelation, my son developed an allergy to sulfa (sulfa is in DMPS and DMSA). We used a combination of EDTA (good lead chelator and approved by the FDA) along with DMPS (good chelator of mercury), which is experimental and not approved by the FDA for chelating children with autism. But the FDA is pretty much corrupted anyway, so I don't give a lot of credence to what they approve and don't. Under the care of a competent physician, such as I do believe Dr. Rao to be, chelation can be safe.

You know your child best. Keep a close eye on things. After seven months, my child developed asthma symptoms within thirty minutes of a treatment. I called Dr. Rao, who thought it was coincidence. I disagreed, but two weeks later we went in for another treatment. Within thirty minutes, the same asthmatic symptoms. This time it snow balled into an infection and pneumonia. But my son is PRONE to pneumonia.

Of course, after the second time, Dr. Rao realized it was not a coincidence and realized that Ethan had developed a new allergy (which ASD kids can do at any time).All in all, even though I was a nervous wreck during every treatment, even though he wound up with a sulfa allergy, I have NO regrets about trying IV chelation. We did a urine collection after every round and sent it off, and I found great satisfaction in seeing how much lead and mercury was getting out of my child's body. I wish we could have continued. I don't know how we will get the remaining mercury out of his body.

With chelation, you must keep an eye on the neutrophil count. If the count got too low, this is called " neutropenia " and this condition can be life-threatening. Dr. Rao is conscientious. He will be honest and frank and answer your questions.

Also, chelation can affect the liver and the kidneys, and so these functions need to be checked at routine intervals. In addition, chelation (the sulfa therein) FEEDS yeast, and our kiddos have a big problem with yeast to begin with. Excess yeast can affect so may areas: behavior, stimming, inappropriate laughter, increase in autistic behaviors and many other things.

If you decide to chelate, your child needs to be yeast free (no breads containing yeast) and also you must stay away from that which feeds yeast: sugar (which is bad for all for us anyway). If your child's yeast goes up, then often a break from chelation is taken to treat the yeast. The " die-off " of yeast can affect the same areas, and with both chelation and yeast treatment, things get worse before they get better.

My son has been treated for yeast overgrowth so many times I have lost count. Whenever he is put on an anti-fungal, things get worse and then so many things get better: focus, speech, communication etc..This is not an easy road, but the end result can be more than worth it. I cannot guarantee these things you do will definitely bring about the progression you desire, but I do believe it is all worth a try.

I was told my child with severe autism would never get better by many in the medical mainstream. They offered no hope. They only offered me psychotropic drugs and a future so bleak for my son I couldn't bear it.

Today, my son talks again and is now having real conversations. He has friends. He makes people laugh. He has a sense of humor and an unbelievable imagination. If I had listened to the medical mainstream, my child would still be pooping on the floor.

When my son couldn't talk, couldn't give eye contact, couldn't express his wants and needs --he couldn't even tell me where it hurt when he screamed inconsolably for hours on end. In this state, I could not KNOW who my child was. The essence of who he is was trapped inside his body. Biomedical intervention set him free.

It doesn't work for all children --dear God, I'd give anything if it did, but hope and faith and giving it a try are better than doing nothing, in my opinion.There are so many options. Dr. Cutler says the only way to chelate is to do it orally and give the drugs every four hours... Many have been helped doing it that way. I think you could do this protocol via suppositories. you would have to go to the autism/mercury yahoo group and post there to get the accuracy of the protocol.

One thing I am sure of: we live in a very toxic world and over toxicity causes a lot of problems both neurologically and medically. There is a clinic in Oklahoma that use chelation on Alzheimer patients. I think it has helped many. Even mainstream medicine is now realizing the benefit of IV EDTA chelation to treat forms of heart disease (clogged arteries). I think the future will see chelation become a standard form of treatment for many things.

But for now it is " new " and there is a lot of skepticism. A hundred and ten years ago, everyone pretty much believed that if your heart stopped that was it, and nobody did anything: boom, the guy is dead. I wonder how long it took the first guy who did CPR not to be thought of as a quack?

I can't make the decision for you, and I certainly wouldn't want you to decide on my advice alone. I'm not a doctor, but I do think you are working with a capable physician who has been doing chelation for a long time.

From now on, before you go to Dr. Rao's office, write down all your questions and be sure to ask them. There were times when we felt rushed there and there were many times that Dr. Rao was very generous with his time. I think I only felt the " rushed " part a couple of times. He will answer your questions.

It is a hard decision to make. There are things you have to watch out for with chelation, but I never felt Dr. Rao wasn't being thorough or careful.I've talked your ear off! I am passionate about trying biomed and hoping that your child is healed.

Sincerely,Haven

January 14, 2010

The GFCF diet is extremely helpful for many kids and only trying it will show

you if it is worth doing it. We've been doing it for years even though I don't

see behavioral changes I do see bowel changes if he gets gluten. Most kids do

very well with MB12 injections. I've seen kids recover with just the diet and

MB12. MB12 is another intervention you just have to try. We've done IV,

suppository, and transdermal chelation. It is huge intervention for some but not

the first thing to try.

>

> Hey guys. I got 's toxic metals testing results back a few days ago,

and while I wait for anyone at Dr. Rao's office to call me back and help me

decipher them (insert groan here), I thought I'd better go ahead and gather some