September 20, 2007

Best Summer Ever: An Update on Chandler’s Progress

I have been away from blogging for the last two months because we spent the summer focusing on getting our boy better. And hell yeah is he better!

After a break from chelation of more than a year, we tested him to find that his lead levels were through the roof. Our DAN doc was alarmed and he recommended that we go straight to IV Calcium EDTA chelation (CaEDTA).

Previously, I had wanted to remain cautious and used the much slower method of oral DMSA, but seeing the results that Chandler had from just 10 sessions this summer, I could not regret my decision more. I wish I had done this for him three years ago.

(So much has been made of the accidental death of the autistic child in PA who was mistakenly given the wrong form of the drug, Na2EDTA, while undergoing chelation for lead, and I wanted to take a moment to link to the CDC’s review of three chelation deaths. These tragedies were medical accidents and not the result of the administration of CaEDTA which is the standard and safe treatment for children with lead poisoning.)

His results have been wonderful. Cautioning, he is still autistic, but his speech is really starting to flow, his eye contact has shot up, he is connecting with the kids in the neighborhood, he is beginning to make little jokes, and get my little jokes, and – miracle of miracles – hold on to your butt – HE IS POTTY TRAINING!!!

The change in him over the first five sessions were the most dramatic. Our neighbors, whom we have been close friends with since before the kids were born, and whose kids play with our kids practically daily, went away for two weeks at the beginning of his IV chelation. We had not told them what we were doing. When they came back, their family was outside with my husband and Chandler. After about 20 minutes I came out and the mom said to me, “What is up with Chandler, he is acting like a different kid?” I told her about the chelation and she said that it was like we had adopted a new child.

His lead levels are still rising, and he still has mercury tucked in there behind the lead (chelators bind to lead first and you have to clear it before you can get the mercury out adequately), so we will be doing this for a while. After a month long break, we will be starting up again and I will give more frequent updates on his progress.

But for now, I wanted to share with everyone our wonderful news of our beautiful boy’s progress.

Thank you to all of the encouragement that so many have given us over the years.


Casdok said...

Well done Chandler!!!

Jacqueline Bullock said...

That is wonderful. He's beautiful, really, really just easy on the eyes.

Don't forget to read your this post on the days you get discouraged to remind you how God is blessing you.

Could you potty train Lauren for me? Ha!

FXSmom said...

Congratulations!! Good job mom :)

Soni said...

My 6 year old son was diagnosed with Autism at the age of 3. One of the struggles we've had was clarifying his functioning level with educators.
I found and used this tool on the site and found it very user-friendly and helpful. Parents are asked to complete a survey that asks questions from a parent, caregiver or educator about a child’s particular learning style and needs. Based on that feedback, it generates a report of individual strategies that can be applied immediately. This was created by a mom with a child on the Autism Spectrum and group of educational consultants, it's really cool. I Hope parents find this as beneficial as we did.

Best regards,

Dadof6Autistickids said...

Great to have you back! What additional info do you have on chelation, especially costs. Or links or other good info. Thanks!

Ginger said...

Thanks Guys...

I should get together a chelation resource list.

But for now... Read, Changing the Course of Autism (see side link), see a Dan Doc, get a urine toxic metals test.

Let me look for a good primer on chelation.

Clay said...

That is really great news about Chandler. I hope he continues to amaze you.

Dan @ Necessary Roughness said...

Any idea why his lead levels are increasing?

Congratulations on potty training.

Ginger said...

most reason for increasing lead is that the lead bound up in his tissues is pouring out.

Docs have found that when they start chelating autistic kids, they end up dumping up to 300 or 400 times the amount of metal that they initially tested for.

But we also had the state come in last week and do an evaluation for lead hazards in our house. He found some and we will be cleaning that up asap.

Since that hazard has always been there, it should be one of the culprits for his toxicity, but would not account for the increase.

Dan @ Necessary Roughness said...

Docs have found that when they start chelating autistic kids, they end up dumping up to 300 or 400 times the amount of metal that they initially tested for.

Ginger, thanks for the quick answer. Do these docs fault the initial tests for not detecting the amount, or is something keeping the initial lead from coming out? If the latter, any theories on that? Thanks.

Ginger said...

The belief is that these kids have an efflux disorder. The inability to excrete heavy metals. They do not make any or enough glutathione, the amino acid that the body generates to bind to metals so that the liver can process them out of the body. Instead of detoxing the way you or I do, the metals become bound in the tissue, most disastrously in the brain, and just stay there doing damage.

When the chelating agents are administered (Glutathione, DMSA, EDTA, DMPS) the metal excretion is measured, they are really only measuring the amount of metals that are released into the blood stream or the urine. There is no way to accurately find out how much mercury is in the brain, for example, with out terminating the subject and doing an autopsy. My analogy is that the metals are like clowns coming out of a clown car, you don't know how many were in there until they stop coming out.

So you test and see if it is in there, then take periodic measurements to see if it is still showing up. When it stops showing up in tests, then you know you have gotten it out.

Laura said...

That's awesome, Ginger! Glad Chandler is doing so well! I had to LOL about the clown car thing, though! We've done some oral chelation with Hutton, but I really want to do the big stuff now, but have to get his current doctor, a naturopath to find us a doctor willing to do the IV. We've seen such an amazing increase in language with the B12 shots we started this summer. It's really encouraging to hear and see such wonderful changes!

Patrick Sullivan Jr. said...

That's so wonderful to hear Ginger. Hope you, Chandler, and Scott (it is Scott right?) are all doing well up in Maine!! :)

Queenbee said...

This is great!
We are about to begin DMSA chelation and your post is encouraging.
We did DMPS earlier this year with a ton of gains. I am anxious but more confident about it this time around.

Congrats on your little man!and he is so handsome too!