Scott Shoemaker's "Autistic" Son and TD-DMSA
(Posted by Patrick Sullivan Jr. 9/26/05)
Scott Shoemaker emailed me for the first time on August 29, 2005 in response to the post Dr. Buttar on IV EDTA Chelation and the Autistic Boy's Death. Since then, we've exchanged several emails back and forth.
Scott was the one who pointed me to the Autism Research Institute's survey of parents and the effectiveness of treatments, which he says has pretty much been his guide for treating his "autistic" son, Joshua.
Interestingly, Scott has *NOT* been using TD-DMPS, but has acheived these results using TD-DMSA. Critics of Dr. Buttar and TD-DMPS should take note of that!
Scott sent the following email to me late last night. (He also posted it here on the Yahoo! Group ChelatingKids2. Registration required.) It is a very touching story that offers more anecdotal evidence that when heavy metals are chelated, autistic symptoms begin to abate. It sounds very similar to Kevin Champagne's story, except of course that Scott is using TD-DMSA and Kevin is using TD-DMPS.
This was posted with Scott's permission. Somewhat long, but it's a quick read. Scroll to the bottom for detailed TD DMSA results after 3 ½ months.
A couple of days ago, I took my (just turned) 6 year old son Jacob to his flag football practice. I usually bring his (almost) 3 ½ year old little brother Joshua with me, and he sometimes gets to run around with the other kids before practice. I was speaking with another parent that was there, and I looked up to see the coach putting a flag belt on Joshua. We laughed thinking that he was putting a belt on him by mistake, and he just did not notice that it was my younger son. Joshua is very tall and stocky for his age and is commonly mistaken for being older. He is bigger than the smallest 5 year old on the team. The league has kids ages 5-7.
After the coach was done putting the belt on him, I called Josh over to me and showed him how the flags worked. I was worried that now that he was wearing a flag belt, he would disrupt the practice by not wanting to leave the field while the team practiced, so I was trying to distract him.
I was somewhat surprised when the coach yelled over to us, "C'mon, Joshua, let's go!" Joshua looked over at the coach, and then at me with these big beaming blue eyes.
I said, "Well go on". I was not sure what was going to happen. He ran out onto the field and kneeled on the ground with the other kids with a smile from ear to ear as the coach spoke to them all as a team. A few minutes later, I was astonished as he got up and ran a few laps around the field hanging with the others as if he had done it several times before.
From there, he stood next to his 6 year old brother in a circle with the others as they proceeded to do jumping jacks and other calisthenics. He needed no direction or help. He watched the others and imitated them. He was one of them.
He practiced with the other kids for a full hour, doing everything that the coach had asked him to do. He would get into a football stance and line up with the rest of the kids and move when the others did. Sure, he struggled with the concept of football and what to do when he got the ball or when to grab the flags off of the guy with the ball, but most 3 1/2 year olds are the same way. He was having the time of his life. He was a football player.
At the end of the practice, I thanked the coach for letting Joshua be a part of practice. I told him that what he did really meant a lot to me and both of my sons.
He said, "Actually he did great out there. He did everything I asked him to. The other kids had a lot of fun with him today."
I then proceeded to tell the coach Joshua's "little secret". I said, "Coach, I do not think you realize the impact of what you did today. You see, Josh was diagnosed with autism 7 months ago, and was barely able to communicate with us until we started treating him for toxic metal poisoning 3 months ago."
The coach seemed a little shocked and taken back at first. He told me that he had not even the slightest clue that there was anything wrong with him. He asked me how old he was. I told him that he was almost 3 ½. He looked at me in amazement, saying that he had a 3 ½ year old son at home that had no interest in going out onto the field with the older kids.
I further explained that this was the same little boy who (until only a few months ago) had days that he would spin himself around in circles all day with his eyes rolled back into his head for entertainment, and had little interest in other children. Back then, he would not even turn his head to look at me when I came home from work if he was preoccupied, not even if I screamed his name a dozen times at the top of my lungs and stood next to him in his peripheral vision.
The coach was shocked and really did not know what to say. He realized that what he did meant a lot to me, and saw how it had impacted me. The fact that he did not know that there was anything wrong with him was also something I was not used to.
The moral of this story...
There are so many times that we do little things that make an impact and touch the lives of others and do not realize it (like the coach). Today, I sent this story to a girl whose 2 year old stopped talking after a flu shot in December. The boy was later diagnosed with autism. The girl forwarded it to some of her friends and family. One girl that she forwarded it to (who does not have any affected children) emailed me and said that she cried when she read it, and thanked me for sharing it. She is the one who pointed out the fact that I, myself, had touched someone else simply by writing this story and probably did not realize it. That is why I edited it and posted it here.
My message...
For the parents out there that are reading this and considering chelation therapy for their "autistic" child and are trying to decide whether it is worth it, let me just say this. Do not listen to the people that tell you that this is BS and that the parents doing this are stupid. Remember one thing. The vast majority of these people telling you NOT to do it HAVE NO EXPERIENCE WITH IT! Instead, listen to the thousands of parents that are doing it now. They do not lie. Get several opinions. Listen to the other parents that are not doing it also and compare the results of the two sets of children. That is why I decided to proceed with this treatment. Out of the dozens of parents of "autistic" children that I spoke to before I started my son's treatment, all of the ones that were seeing drastic improvements in their children had one thing in common.... Chelation Therapy.
Also, listen to the doctor’s who have risked their careers and are sometimes ridiculed by others in the medical field for taking a stance on something that they believe in, and are seeing results. Many of them have done the research themselves unlike the doctors who quickly discount it because that is what they learned they should do in medical school. Look at some of the urine, stool, and hair tests of the children of some of these "crazy" parents that are doing this.
The Bottom Line, and some final thoughts...
If chelation therapy is quackery, then I will be a quack all day if my son is clearly benefiting from it. If it is a "placebo", as some say, then I can attest that it is the most effective placebo around, and I want more of it for my son. Maybe somebody could explain this to my 3 year old who does not know what a placebo is. This therapy is working for us. I have the evidence running around my home playing with his brother and sister and other children, and now he smiles at me every day when I come home from work as he runs up to give me a big hug when I walk in the door. Three and a half months ago, he would not have even turned around.
Scott
***Notes on Joshua's Progress after 3 ½ months of chelation...
We have been chelating with TD DMSA from the Lee Silsby clinic in Cleveland for a total of 9 rounds, or just over 16 weeks, in a 3 days on 11 days off protocol. He also gets TD glutathione and a slew of supplements on a daily basis.
When he was tested 5 months ago around his 3rd birthday, his comprehension level was that of a 13 month old. He was considered 22 months behind. Two months after he was tested, he had made little progress. That is when we started chelating him. Since then, his progress has exploded. The results that we have seen with him are amazing. He was just retested, and he is now considered only 10 months behind in speech and comprehension (31 months - he is 41 months old). If these tests were accurate, that means that my son's comprehension level jumped ahead 15 months in only a 3 month period of time!
Here is an outline of progress that he has made in the last 3 months.
Before we started, Joshua was afraid of his little sister and would not go near her or take an interest in her. After 3 days of chelation, he started playing with her, giving her toys, her binky and laughing and interacting with her. Now that is all he wants to do! He also gave her a hug and a kiss that same day on his own. It was astounding. (Update -- Now he looks out for her, telling her "no, sissy" when she is doing something she is not supposed to and he walks behind her holding her hands to help her walk. He also tries to have conversations with her.) Besides chelation, she has been the best thing for him.
He stopped spinning himself immediately after his first 3 day treatment, and has not done it since. Keep in mind that this was an every day occurrence.
He learned how to wave hello and good bye, and now understands that when I leave for work in the morning that I am coming back, and he no longer screams when I walk out the door (he gives me a smile and a hug, says good-bye, waves and sometimes says I love you Daddy!). I get choked up every time I leave the house.
His eye contact is EXCELLENT compared to before. It is not even as issue now. Before I would have rated it slightly above average for someone with his condition.
He learned to take off and put on his own shoes and he lets us brush his teeth.
He used to want to watch the same movies over and over again ALL THE TIME. Now, he hardly watches the TV, and when he does, it is usually something that his older brother would watch that is for older kids that would have never interested him before.
He will now turn around immediately if I (or others) call his name at a normal tone on the first try instead of having to stand next to him and scream progressively louder a dozen times.
He no longer has tantrums of any sort.
His comprehension has gone through the roof. I can literally tell him to do anything for me and he understands. He previously only understood a few phrases. I am constantly testing him with tasks, and 9 times out of 10 he will understand and do what I tell him.
His interaction with other children has also improved drastically. He seeks out other kids and tries to play with them on the playground we take him to. He used to just watch them or sit by himself and play with the toy du jour.
He is speaking in longer phrases and picking up more words every day. We are starting to have conversations with him. He maintains excellent eye contact and uses proper facial expressions and voice inflection during these talks.
He has just started pointing, asking questions, and commenting on things that he would have never noticed before. (Example: He walked up to me today and pointed to a cut on my ankle when I was lying on the couch and said, "Oh, No! What happened? Are you alright? You have a BooBoo." I told him that I fell down and got hurt. He walked over to a cedar chest and got a blanket. He then covered up my ankle very gently and said, "There... All better
now".) Three months ago, he would have not even noticed it and would have said nothing. He probably would not have even interacted with me unless I tried to initiate something with him first, and that is a stretch.His stimming has decreased. He still does the hand flapping thing occasionally, but not as pronounced or as much (I suspect that he either has yeast or the measles virus in his gut like a lot of these kids have).
He attempts to (and sometimes does) get himself dressed.
He washes his own hands.
Please keep in mind that all of this progress has been in the last 3 ½ months. His speech therapist has told us that he has progressed faster in the shortest amount of time than any other child that she has ever worked with (she has been doing this since 1988). She has also told us that he is the only child that she has worked with that has been going through this treatment that she knows of. We originally did not tell her, because we wanted to see if she noticed a difference (she did immediately). She has since sent other parents to us.
One other note... This child has never had any other behavioral therapies other than one hour of speech and OT a week. He is not on a GF/CF diet because he is not g&c intolerant. There is nothing else that I can attribute his progress to. My wife and I make it a habit to constantly challenge him and test him, and he never ceases to amaze us.
Hopefully, someone will be able to get something from this post. Feel free to contact me if anyone has any questions on this.
UPDATE OCT 6, 2005: "Until someone can prove to me that chelation is NOT what is making my son better, I am in it for the long haul. You see, proof goes both ways ;~)" Read the rest of what Scott Shoemaker had to say in that comment.
UPDATE NOV 14, 2005: Read the latest update from Scott about his son Joshua.
UPDATE MAR 4, 2006: The Shoemaker's story is syndicated nationally to all NBC affiliates. (Days before the story airs, the Shoemakers get rail-roaded by a clinic trying to capitalize on their story. Read Scott's clarification.)
RELATED: Read about Kevin Champagne's "Autistic" Son.
For more info on mercury poisoning and what you can do about it, please visit www.GenerationRescue.org, a group founded by parents for parents.
Technorati Tags: Autism, Mercury Autism
Does Scott Shoemaker realize that it's microencapsulated? - Does his son's urine smell like sulfur? - Maybe the flag football coach is really the reason for your son's success or maybe he is just glad to be out of daycare! -- I AM OBVIOUSLY JUST KIDDING!!! -- Those were the kind of stupid comments that were posted after Patrick posted my son's story. -- I think the assumptions these KnowItAlls made about my son and his progress shed a lot of light on the assumptions they constantly make about Dr. Buttar and chelation. I believe TD-DMSA was also developed by Dr. Buttar. -- When I got home from work this morning, I read Scott Shoemaker's story out loud to my wife while she was getting ready for work. I had to stop several times because I got too choked up to continue, but by the time I read it all the way through my wife and I were both overwhelmed with emotion. -- If anyone that has an autistic child in their life, reads Scott's story, and does not shed a tear, they seriously have something missing inside themselves.
Posted by: Kevin Champagne | September 27, 2005 at 04:05 AM
I was wrong about TD-DMSA being developed by Dr. Buttar. According to The National Drug Code Directory, TD-DMPS and TD-EDTA are registered under Dr. Buttar's Balance Dermaceuticals brand line, but not TD-DMSA. -- Scott can you provide some more information on TD-DMSA? - Was it developed by the Lee Silsby clinic? - It sounds like it's working great!
Posted by: Kevin Champagne | September 27, 2005 at 11:13 AM
Kevin-
The TD DMSA comes in a two part cream. You use equal amounts of both and rub it into the skin on the thin areas (shins, ankles, lower back, tops of feet, etc.) 3 times a day for 3 days straight. Then you do not have to apply it again for 11 days. We also give him TD Glutathione twice daily. The TD DMSA smells like a beauty salon when somebody is getting a perm. A small price to pay for bringing normalcy to my son's life.) We get it from http://www.leesilsby.com. They have more info and testimonials there.
I do not know whether his urine smells like sulphur, I never checked, nor do I want to. We pump a ton of fluids down him. His stools are extremely black and smell very sulpher-ish when he is on this stuff.
One other thing to note...
I sympathize somewhat with SOME of these skeptics, because I was somewhat skeptical myself at first. I talked to a ton of parents until I was convinced that something was happening with this process before I tried it.
And Oh, yeah, it is microencapsulated. LOL!
Scott
Posted by: Scott Shoemaker | September 27, 2005 at 03:33 PM
Scott,
BM's that smell like suphur? How could that happen when any chemisty book will tell you that DMSA or DMPS CANNOT be absorbed through the skin. Sounds strangely similar to my own experience with TD DMPS. The sulpher has to be coming from someplace else. Does he eat rotten eggs??
Posted by: Pat Sullivan | September 27, 2005 at 10:21 PM
Critics of Chelation Therapy have never used it on
themselves, nor their loved ones, nor on their patients, nor have
they read the voluminous literature that has been compiled by
various physicians and scientists who are members of the
American College of Advancement in Medicine (ACAM), an
organization dedicated to certification in the practice of Chelation
Therapy and to further its research. --...
It is safe to say that every article written against Chelation Therapy and printed in “respectable” journals has been written by a physician or researcher who has assumed the mantle of Authority, yet has absolutely no knowledge of it.
Posted by: Kevin Champagne | September 28, 2005 at 10:17 PM
I am gathering information on various methods of chelation for my autistic spectrum 9 year old son. I was wondering have either of you experienced regressions or any negative efects from either the td-dmps or the td-dmsa? Also, why is td-dmps given every other day and the td-dmsa given 3 days on and 11 days off?
Posted by: Anita Mandato | October 01, 2005 at 08:13 PM
Have you watched any of Dr. Buttar's video clips at autismmedia.org? I think some of your questions will be answered there
http://www.autismmedia.org/media/buttar4.wmv Dr. Buttar talks about the difference between DMSA, and DMPS in this video clip. You will probably have to copy the address above and then paste it in your browser to view the video. Dr. Buttar will be speaking in Princeton, NJ, and Syracuse, NY. soon. If you're interested in hearing him speak in person, I can send you more information.Posted by: Kevin Champagne | October 01, 2005 at 10:59 PM
Scott,it is so nice of you to share your story with us.My 9 years old autistic son is on TD-DMPS for the last 3 1/2 months with no gains,he even regressed.His test resuls were also showing an elevated lead.Do you think it's better for us to switch to TD-DMSA?I live oversees and we do not have a DAN doctor yet and it's so hard to take this desicions by yourself.
Posted by: Mirena Velkova | October 02, 2005 at 06:07 AM
Posted by: Kevin Champagne | October 02, 2005 at 11:09 AM
Mirena,
I think that every child is different. One may react better to TD DMSA and another may do better on TD DMPS. However, if your child is showing high levels of lead, You may think about switching. TD DMSA is a better lead chelator I am told. My child is very lead toxic.
If you child regresses, you may want to decrease the dose that you are giving him. Our child regresses slightly after each round, but it seems very short-lived. It usually happens if he is constipated. You have to MAKE SURE YOU KEEP THE BMs MOVING! We look forward to every round, because we see big gains.
Good Luck to you and your child!
Scott
Posted by: Scott Shoemaker | October 03, 2005 at 01:53 PM
Hi Kevin!
Thanks! I watched Dr. Buttar' videos and they were very helpful. Thanks to you and Scott for your inspiring stories.
Hi Mirena!
My son is also 9 and has high lead and high mercury. Our doctor who is one of the think tank DAN drs. has suggested we alternate weeks with td-dmps and td-edta which is a very good lead chelater. Although it does seem easier to use just one product like td-dmsa for both metals.
I will ask him about this and let you know what he says.
Anita
Posted by: Anita Mandato | October 03, 2005 at 06:07 PM
Anita and Mirena, thanks for commenting. You both should check out the Yahoo! Group, ChelatingKids2. I'm not personally a member of that group, but I know Scott is and there is much more "tactical" discussions going on there that might help you out better on making the decision. Best wishes to you both!
Posted by: Patrick Sullivan Jr. | October 03, 2005 at 06:16 PM
DMSA IS GIVEN IN THE TREATMENT OF INFANT OR CHILDHOOD LEAD INTOXICACION.
DMSA INCREASES THE ABSORPTION OF LEAD FRON GI TRACT SIMILARLY TO ORAL EDTA.
THE GERMAN LITERATURE CLAIMS THAT DMPS IS BEST FOR ORGANIC,INORGANIC AND METAL MERCURY.
AMERICAN RESEARCHES CLAIMS THAT DMSA.
DMSA ALSO APPEARS TO COMPLEX EASILY WITH ORGANIC MERCURY; DMPS COMPLEXES MORE EASILY WITH INORGANIC MERCURY.
Posted by: alejandro diaz | October 08, 2005 at 04:57 PM
I have a 10 year old girl in the autism spectrum and considering TD-DMPS or DMSA. I have read up on Buttar's Protcol which involves blood taking, urine, stool and hair samples. My problem would be getting my child to get blood taking our of her. I am so much wanting to get doing the Celating but I always think of Buttar's "DO NOT HARM" and i am afriad i may harm my daughter.
Could i get a little insight on the types of TESTS prior/during this chelation.
Posted by: John Quartararo | February 22, 2006 at 07:15 AM
John, you are right to be concerned for your daughter regarding any treatment and/or testing that she would receive. But having blood drawn is actually quite safe. While almost no one likes needles -- and especially not little kids -- I think your fear about this aspect of the protocol may be misplaced. Clearly, chelation is a serious biomedical treatment that should not be taken lightly. But it is a viable option that, in my non-expert opinion, should be given careful consideration by any parent with an autistic child.
I am not an expert on Dr. Buttar's protocol, but for more about the tests, I recommend doing a bit more research on the web at www.recoveryprotocol.com, www.tddmps.com, and www.drbuttar.com. And check out the Yahoo! Group ChelatingKids2. This is a group of parents that are using or have used chelation on their kids.
(And if this is your first step into the "autism/mercury/chelation" world, be forewarned that there are vocal supporters and opponents who, on both sides of the debate, say stupid things and call each other names sometimes.)
Best wishes to you, your daughter, and to your family!
Posted by: Patrick Sullivan Jr. | February 22, 2006 at 04:14 PM
I have an 8 year old autistic boy who had a blood test and they said his levels were fine. That his mercury level was okay. Is this treatment only for kids with those levels? I just keep hoping for some help for him. If you can help me please reply.
thanks,
Barbara Rhodes
Posted by: Barbara Rhodes | March 04, 2006 at 01:48 PM
Barabara, I believe it is generally accepted that blood mercury levels will never be high unless there has been a recent exposure. Instead mercury finds its way into the organs and tissues. If you are just beginning your search, I highly recommend you do a lot of reading at sites like GenerationRescue, SafeMinds, Autism Research Institute. Ask the ChelatingKids2 group for doctor in your area. You're going to have to make up your own mind, but beware that there are MANY skeptics of mercury=autism.
God bless and best wishes you, your son and your family.
Posted by: Patrick Sullivan Jr. | March 04, 2006 at 04:11 PM
Dear Pat, Scott and Kevin,
What a great blog this is! Scott, the stories of Joshua are incredible and I commend all... for getting it heard. My son is 100% recovered from autism through biomedical intervention specifically chelation. If I had waited for double- blind placebo studies, he may not have responded so well. Thanks to the Shoemakers and all families out there dealing with autism and activism everyday!
Posted by: julia berle | June 13, 2006 at 05:14 AM
Julia Berle,
I did a Yahoo search for your name tonight and found 2 videos of you and your son at Fair Autism Media. Congratulations to you and your son on his recovery and I also want to thank you for not forgetting about those of us that are still plugging away on the recovery road. From time to time I get a little down because this is such a long process but seeing videos of recovered children like Baxter, and Joshua Shoemaker, pumps me right back up!
And same to you Scott Shoemaker - congratulations on your son's recovery and it was nice to meet you and your wife in Washington, DC. back in April. You both did a great job when you spoke at the conference.
I know our day will come.
Posted by: Kevin Champagne | June 20, 2006 at 09:42 PM
Dear Scott,
my son is 3 we have been suplementing him with minerals, B vitamins and attempting to treat yeast and bacteria in his gut for 5 months. He has made some mild improvement also accounted for by dietary interventions. We are considering transdermal glutathione (recomended by our Dan! whilst still treating the yeast and bacteria. Does transdermal glutathione exacerbate yeast. Does TD DMSA exacerbate yeast as this is the next step our DAN! recomends. My sons porpherin levels were high.
Posted by: Dave McGrath | August 19, 2006 at 09:36 AM
Dave,
Yes, it is common to stir up yeast with TD DMSA and TD Glutathione, in some kids more that others. We have been pretty lucky in this area though.
Good Luck with your son, and I hope you see similar results early on.
Scott
Posted by: Scott Shoemaker | August 20, 2006 at 03:23 PM
Dear Scott, You were recently at the Autism Conference in Long Island, NY at the Hyatt. In previous years they sold the cd's to view the lectures. I met you as you were walking out but you have forgotten one oy your items and had to run back. I am so disappointed we could not hook up again. I am very interested in your story as we see that our autistic son is responding to his iv chelation and would like to read or see more about your findings. Is there anyway to view this on any site? Thank you for your story and trying to reach the parents and professionals involved. Bernice LI, NY
Posted by: Bernice Steffens | October 28, 2007 at 06:16 AM