RecoveringNicholas.com

I’m posting this because it’s a question I get asked fairly often and didn’t want to look this up again!

For round 1 and 2, I used 8mg DMSA only
For round 3, I added 8mg ALA, but this made him sick to his stomach, so I dropped it down to 4mg.
For round 8, I increased dmsa to 12.5mg and ala to 6.25mg
For round 18, I increased dmsa to 16.7mg and ala to 8.33mg
For round 30, I increased dmsa to 20mg and ala to 10mg
For round 41, I increased dmsa to 25mg and ala to 20mg
For round 42, I increased ala to 25 so I could just hand him a capsule of each to swallow

Before I get into the protocol we’re using to recover Nicholas, I just want to mention that Andy’s books, Amalgam Illness and Finding Hidden Hair Toxicities have been two of the most helpful books I have purchased yet. (Best place to purchase them is from noamalgam.com) Amalgam Illness has a wonderful section all about supplements and I’ve referenced this section more times than I can count. He explains the plateau many parents experience while chelating - and why you should continue because you will start seeing gains again.

The Protocol:
Dosing - 1/8 to 1/2 mg of DMSA (and then add in ALA after a few rounds or months if there was recent mercury exposure) per pound of body weight. So, a 50 pound child’s dose would be 6.25 - 25mg per dose.
Dose Frequency - Every 3 hours from Friday through Monday (including overnight - you can stretch to 4 hours while asleep, but no more)
We chelate every weekend unless I need to sleep through the night without getting up to give him his dose or if we have something else going on. Some parents do every other weekend.

Many people ask me how I possibly get up in the middle of the night to give him his dose. Well, I have no other choice. After researching other protocols, I felt that this was the one that was safest. I know there are others who give their child DMSA every 8 hours and still see gains, however, I have also heard from many others that this worked for a while and then they hit a wall and their child regressed. The problem with infrequent dosing protocols is that the half-life of the chelator is not taken into account. For example, when you give doses of dmsa every 8 hours for 3 days, this is what is happening: dose > redistribution > dose > redistribution > dose > redistribution > dose > redistribution > dose > redistribution > dose > redistribution > dose > redistribution > dose > redistribution > dose > redistribution. When you dose properly in 3-4 hour intervals, this is what is happening: dose > dose > dose > dose > dose > dose > dose > dose > dose > dose > dose > dose > dose > dose > dose > dose > dose > redistribution. You want to minimize redistribution as much as you possibly can.

Getting up does get easier, I can assure you. On these weekends, my husband and I take turns with the night doses - I take the first one (and sometimes I stay up researching, then go to bed) and then he takes the 6am dose - so at least we both got a descent stretch of uninterrupted sleep.

Many people have also asked me about yeast during oral chelation because they have been made to believe that yeast would be uncontrollable. We were told by a DAN that our only choice for chelation would be IV because my son is a gut and yeast kid. Well, in our case, he could not have been more wrong and unfortunately the strong-arm technique to get me to subject my son to IV’s (when taking him for bloodwork was a nightmare) and not even agree to oversee my son’s case for a trial of this protocol just ended up in him losing a patient - and a recovery story.

The yeast has not been what I thought it would be - and in 31 rounds, we haven’t skipped weekends because of yeast or gut issues - NOT ONCE. I have Nicholas taking 40mg of Biotin every day split into 4 doses of 10mg. Nicholas is also taking 900mg of Enhansa now (best supplement EVER!) and 2 caps of Klaire’s detox probiotic, 2 culturelle and a dropperful of Living Streams probiotics. That’s it.

The key here is to start slow - making your child sick or intolerable does not mean you are going to recover him/her faster. Giving larger doses increases your chances of gut issues, yeast flares, etc - and you will have to stop chelating to deal with these issues - so in the end, it’s just not worth it. You want to find a dose they are comfortable with so you can continue to live your life while chelating. This is not a race - and this process can take you 1 or more years, so keep telling yourself… This is not a sprint, this is a marathon.

How do you split up 25mg capsules? Well, some folks open the capsule out and dump it onto a clean surface and split the piles into equal sizes (using a razor blade, credit card, etc.). If you want a 5mg dose, you split a 25 capsule into 5 equal piles. Exact measurement is not required — the dosing frequency is more important than having a 5.25mg dose and then a 4.75mg dose.

Others, myself included, will take 5 teaspoons of juice (I use 4 25mg dmsa caps and 2 25mg ALA caps now for 5 doses) and will mix all of these capsules up very well. I will then put one dose in a syringe that hold’s a teaspoon and do this 5 times. I put the syringes, tip up, in the refridgerator until I am ready to give the dose. (I do this when I need to give dose 1, so that the last dose has only been in the fridge 12 hours. Longer than this, you can start losing potency from what I understand. Then when you are ready to give it, squirt it in a cup or whatever you are giving it in and you’re done. Using an acidic juice, like orange, works best.

There are suggested (required, really) supplements that your child should be on prior to starting. They are probably getting many of them in their multi-vitamin, but check just to be sure. As with all supplements, add one at a time so you if your child is reacting to one supplement in particular.

Calcium: 5-20 mg/pound divided into four doses over the day
Essential Fatty Acid (fish oil or flax, see notes above) 1 to 3 tbsp/day
Magnesium: 10 mg/pound divided into four doses over the day
Milk Thistle: ¼-1 cap (20-80 mg) per dose/ 4 times a day
Molybdenum: 5-20 mcg/pound divided into four doses over the day
Selenium: 1-2 mcg/pound/divided into four doses over the day
Vitamin A: 5 RDA’s/day. Be sure to consider if your EFA is a source
Vitamin B: 12.5-25 mg/4 times a day
Vitamin C: 5 to 20 mg/pound per dose/4 times a day
Vitamin E: 500 IU/day
Zinc: 1 mg per 2 lbs + 20 mgs divided into four doses over the day.

Want support from other parents using this protocol?
Join us on this group:
http://health.groups.yahoo.com/group/AndyCutlerChelationForAutism/

A great post from Andy:
Andy’s post about recovery percentages, etc.

In addition to my own recovery story, here are some other stories from those who have recovered or are currently in the process of recovering from using DMSA and/or ALA. For more information on the protocol I am using to recover my son, click here.

New! From Severely Autistic at age 6 to…

Michael, age 2

Andy, age 6

Mike, age 6

Brianna, age 7

Boy, age 4

Boy, age 9

Samuel, age 8

Boy, age 4

Girl, age 4

Avery

Grace, age 6

Gavin, age 6

Cameron, age 8 - also note how low, frequent dosing was better for him than large, infrequent dosing

Eve, age 6

Alex, age 5

More to come….

Yep, you guessed it… I’m writing about and posting recovery stories today….

In case you have not already seen them, there are a bunch of recovery videos here:

http://recoveryvideos.com/

Generation Rescue Testimonials

Readers: Please go to AutismSalutes.com to send your congratulations to Angela (Nathan’s mom) so she receives them.

From AutismSalutes.com:

My son, Nathan, lost his autism diagnosis on April 8th, 2009. I don’t even know where to begin. I am still trying to bring my mind back from being around the moon for HIM!!! I have shed many tears of complete and utter joy. I almost feel speechless. There is so much to tell. Not so much about the hell that we’ve been through, but how a deeper hell was avoided because I trusted the voice inside me. I trusted my Mother Warrior voice. I come from a long line of Mother Warriors….. Click to read the whole entry.

Another round of chelation complete! 35 rounds, here we come!

MSG is being sprayed right on fruits, nuts, seeds, grains, and vegetables as they grow — even those used in baby food
link: http://truthinlabeling.org/msgsprayed.html

In the 1970s, reluctant food processors “voluntarily” took processed free glutamic acid (MSG) out of baby food. Today it’s back, in fertilizers called “Omega Protein Refined/Hydrolyzed Fish Emulsion” and “Steam Hydrolyzed Feather Meal,” both of which contain hydrolyzed proteins; and in a product called AuxiGro WP Plant Metabolic Primer (AuxiGro) produced by Emerald BioAgriculture (formerly Auxein Corporation), which contains both hydrolyzed protein(s) and “monosodium glutamate.” AuxiGro is being sprayed on some of the vegetables we and our children will eat, into the air we and our children must breath, and onto the ground from which it can move into drinking water. Head lettuce, leaf lettuce, tomatoes, potatoes, and peanuts were among the first crops targeted. On September 12, 2000, the Auxein Corporation Web site gave the following information:

Crops registered include: Celery; Fresh Market Cucumbers; Edible Navy and Pinto Beans; Grapes; Bulb Onions; Bell, Green and Jalapeno Peppers; Iceberg Head Lettuce; Romaine and Butter Leaf Lettuce; Peanuts; Potatoes; Snap Beans; Strawberries; Processing Tomatoes; Fresh Tomatoes; and Watermelons.
Today, there is no crop that we know of that has not been approved for treatment with MSG by the U.S. Environmental Protection Agency (EPA).

Click to read more…

So, we took a ride yesterday and did a few different things - and I have to comment on it because when we’ve tried going several places with Nicholas - it always seemed to end in a breakdown of sorts….

So, first stop: Toys R Us. Yes, I know, I know - the kid does not need anymore toys. But he’s been looking for a particular one, so I figured at the very least he could play on their train table for a little while. He was very well behaved. Left when it was time to leave.

Second stop: An outdoor store which sells sheds, swingsets, etc. Nicholas again played really well with some other kids who were there. When the 2 kids left, he wanted Mommy to play on the swingset with him. (Yes, my fat ass went down the slide - several times - afterall, I could not disappoint Nicholas when he told me it was my turn!) Then, we went looking at their fish pond and Nicholas fed the fish. He had such a blast watching all of the beautiful koi come to the surface to eat.

Third stop: Fuddruckers. Nicholas and Mommy played the video games while we were waiting for our food and once it was at the table, Nicholas went to eat - without argument. He stayed at the table while we ate and when we were done, he said, “it’s time to go home”

Never before have we been able to go from place to place to place like this with so much ease - and without a tantrum happening somewhere along the way.

I was impressed once again with how Nicholas wanted to play with the other kids. When they left, he went looking for them - asking me “where did the kids go?”

This past Friday, we took Nicholas to Burger King because they have the big play place. Well, the manager doesn’t check on the temperature in that room (EVER!) and it was 96 degrees in there. So, we decided to go elsewhere and having to leave after just arriving would have easily ended in a tantruming kid. I had the picture of me carrying a 60+ pound kicking and screaming child out to the car and then wrestling him into the car seat. Nope, didn’t happen. I said, Nicholas, come on, let’s go to the park instead. He came down out of the jungle gym and left without a fight, without anything.

So, off to the park we went. Nicholas ran around with all of the kids like he was one of them. From the outside, you would have ever known that he was any different from them. Kids who were younger, kids who were older. He ran around and laughed, screamed and was just so happy. Climbing up, sliding down and then doing it all over again. He even flipped over the side of the slide at one point and got all dirty. (in the past, this would have ruined his day) he just got up, brushed himself off, said “oops” and kept going.

He wanted to swing - which he hasn’t wanted to do in a long, long time. I pushed him and pushed him, he laughed in sheer delight. He told me to stop, I stopped him - he laughed. GO!!!!!!! So i had to push. Push faster mommy! It was shocking. Nicholas did not want to get off the swing at all. Huge difference from the past.

Wow — I cannot believe we hit 30 already! Time really flies.

Increased the doses of both ALA and DMSA this round.
DMSA: we increased from 16.67mg per round to 20mg per round.
ALA: we increased from 8.33mg per round to 10mg per round.

Round 50… here we come!!!