Focus, Echolalia, Self Stim Beh, Anxiety - help!!!

Discuss autism diets and biomedical treatments of autism.

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mya
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Focus, Echolalia, Self Stim Beh, Anxiety - help!!!

Postby mya » Tue May 12, 2015 10:42 am

Hi,

My son turns 4 in few weeks and its brought back an imp concern for me. We have been doing biomedical treatment and tried various stuff (SDC, Feingold diet, supplements, probiotics, B12 shots, reflexology, homepathy, DAN intervention, etc) for the past 2 years now - but his primary issue remains - his limited focus and attention - right from his early intervention days - his goal has been "will attend to adult directed task for 5 mins" - this goal got carried out to IEP program and now even after full time ABA IEP program + private OT,ABA,speech + bio medical treatments my sons focus is terrible. He can stim off anything and everything. Its almost about control for him now. He can look right at you and still tune you out. He cannot seem to focus for more than a few seconds on a task without stimming - he is pretty much in his bubble the whole time - when I tap him he picks up a few words I am saying and will move on to doing that task but then in seconds starts to stim of that task. He is verbal and is very bright but we cannot get him to do or say anything functional. He talks to himself all day long about stuff that makes no sense - sometimes he will say the same sentence all day long. I have tried to communicate with picture schedule (limiting words that he can stim off), I have tried to attend to his sensory needs (deep pressure, brushing, joint compression, reflexology, pressure vest, weighted blanket, bouncing him, spinning, virbation, etc - tried supplements, essential oils - but nothing works for more than seconds - I get his attention for few seconds sometimes minutes and then he goes back to being in his bubble. Its almost behavioral now. School is having a tough time breaking this pattern too. Its getting very frustrating now. He needs constant one on one - and if we leave him to be - he can stim of the same thing all day long. He is just to content being on his own with his strings and numbers. I wanted to know what has worked for you guys? Any supplements or treatment? At this point willing to try anything to see some difference

Thanks,
Mya

kulkulkan
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Re: Focus, Echolalia, Self Stim Beh, Anxiety - help!!!

Postby kulkulkan » Tue May 12, 2015 12:00 pm

Sounds to me stimming and engagement is the core issue - not really focus or attention or will attend to adult directed task for 5 mins. If you cannot engage a child (using rewards or play), it is difficult to teach. Another unique way to engage is actually with stimming itself - Son Rise. I am guessing that he likely has great attention and focus on things that he wants to stim on, so this therapy tries to capitalize on that to build natural engagement and teach. We haven`t tried it as it was fairly easy to engage our child using any number of techniques, but might make sense for you to check it out.

From biomed perspective, the only supplement that has been studied to show reduction in repetitive behaviors (i.e. stimming) is NAC (high doses). That is an antioxidant which increases GSH. We haven`t tried this in high doses like the studies but that has been our primary focus from biomed perspective - raising intracellular glutathione (GSH) using antioxidants and MB12 and methyl folate.

Some of the physical stims (spinning) and being in his own world that we saw early on appeared to be directly related to milk.

Pirsig
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Re: Focus, Echolalia, Self Stim Beh, Anxiety - help!!!

Postby Pirsig » Tue May 12, 2015 12:58 pm

Mya,

I know you mentioned in the other thread about trying and keeping the treatment costs down for biomedical interventions.

One of the best interventions (top 3) I have tried so far is the low, frequent dose Andy Cutler chelation protocol. This does not cost a lot of money and you only need a doctor to write a prescription for DMSA. ALA is still available over the counter. You might want to research this thoroughly here - http://onibasu.com/wiki/Cutler_protocol

A word of CAUTION though - chelation can be very dangerous if it is done improperly and can lead to permanent, severe neurological damage. Cutler's protocol has to be followed strictly as this leads to very good results in about 75% of the kids with minimal side effects.

Basically, you will be starting off with DMSA at 1/8mg per pound of body weight given every 4 hours including waking up at night. Its also given on a 3 days on four days off schedule. Parents start around 8am Friday morning and keep giving it every 4 hours till 8am Monday morning. This is called a "round". Then, they take 4 days off and start again on a Friday.

You can add ALA after 5-6 rounds of DMSA assuming there has been no recent mercury exposure (eg. vaccinations). DMSA does not cross the blood brain barrier, but ALA crosses it. So, the idea is for the DMSA to reduce the body burden and ALA removes the mercury from the brain. Remember, that ALA has to be given every 3 hours including waking up at night.

Cutler says that if the kids are heavy metal toxic, then this shows noticeable, undeniable differences within 4-5 rounds (either positive or negative). Kids who are not toxic will not show any changes if they follow this (no positive or negative changes). If this works on your son, then you will have to do this for 50-100 rounds before they are free of heavy metals.

More details can be found in the book "Fight Autism and Win" or you can read "Amalgam Illness" by Andy Cutler himself. This guy is a Ph.D from Princeton university and came up with this protocol to cure himself from mercury poisoning caused by silver amalgams placed in his mouth. The principles he developed also apply to other diseases like Autism, Bipolar disorder, Fibromyalgia, MS etc.

Common Errors that parents or even some DAN doctors make with this protocol -

1) Giving DMSA or ALA in high doses - this leads to a lot of side effects and does not significantly accelerate the excretion of metals.
2) Giving DMSA or ALA every 8 hours - this is dangerous and causes redistribution of metals. AVOID these doctors at all costs.
3) Not doing anything about yeast - The most common side effect during chelation is yeast overgrowth. Use garlic cloves, GSE or other natural products on an everyday basis to control yeast.
4) High dose DMSA challenge tests - These have no diagnostic value and are dangerous for some mercury toxic individuals.

Santosg
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Re: Focus, Echolalia, Self Stim Beh, Anxiety - help!!!

Postby Santosg » Wed May 13, 2015 2:27 am

Your son sounds a lot like mine. Mine is a bit younger but definitely does the same sort of behavior. I think that a big problem with autistic children is routine. In place of focusing on visual schedule, I'd try to add novelty to his day. You want him to be interested in the world and not just his own particular obsessions. One way to do this, I strongly believe, is by actively having him engage in the world around him. Take him to different places. Talk abot where you'll be going and what you're going to do there. Ask him to help you find something. Make the activity fun and interesting, dynamic, and unpredictable. I can tell you one of the things that made me feel the greatest sense of accomplishment with my son was when I started taking him for walks and when we'd pass a wall he'd reach out and touch it with his fingers as we walked by. He had become curious about the world and not just counting his fingers all day long. Regardless of where you live, you'll always find a free community activity. I never use to be much for just going to these things, but they are actually tremendously beneficial for our kids. And it also helps you build a bond.

andyseattle
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Re: Focus, Echolalia, Self Stim Beh, Anxiety - help!!!

Postby andyseattle » Wed May 13, 2015 4:48 am

May be these will help you,

Phosphatidyl Serine - IsoPhos
Phosphatidyl Choline - Phoschol
High dose of EPA 2 g/day - Minami brand
Cod liver oil 1-2 g/ day - Nordic brand
CoEnzym B1
Essential amino acids 75mg
Liposome B complex
-------------------------
Chelation - must do
- We had done with DMPS for 2 years. A little bit of side effect. But, it's worth to do.
------------------------
Parasite?
------------------------
Stem Cell @ Better Being Hospital ?

mya
Posts: 68
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Re: Focus, Echolalia, Self Stim Beh, Anxiety - help!!!

Postby mya » Wed May 13, 2015 1:14 pm

Thank you everyone - andyseattle we are already doing the supplements you listen and santosg we do take him places and keep it interesting (parks, amusement parks, zoo, aquarium, etc) even on weekdays we do interesting things but he is so sensory that he chooses to tune out.

I think the one thing we have not tried is chelation and it looks like that might be the way to go. So going to read more about it and talk to his DAN in the next session. I was under the impression that we need to heal the gut first before doing chelation but as I read more it looks like thats not always the case. Def going to bring it up with his DAN - thanks again for all your input

Thanks,
Mya

mya
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Re: Focus, Echolalia, Self Stim Beh, Anxiety - help!!!

Postby mya » Wed May 13, 2015 3:54 pm

Also forgot to add he has been GFCFSF and on SCD for over a year.

FatherOf2
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Re: Focus, Echolalia, Self Stim Beh, Anxiety - help!!!

Postby FatherOf2 » Wed May 13, 2015 9:31 pm

What you describe is autism. Treating is not easy. We had and still have the same symptoms. Chelation even if done properly can cause severe behavior problems. The mentioned website was created to sell the book fight autism and win. If you post a negative experience with chelation, they will ban you like me. Try Galantamine and HBOT. Have you tested EEG?

Pirsig
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Re: Focus, Echolalia, Self Stim Beh, Anxiety - help!!!

Postby Pirsig » Wed May 13, 2015 11:12 pm

FatherOf2 wrote: If you post a negative experience with chelation, they will ban you like me.


This is unacceptable - everyone should have a right to post their experiences (positive or negative) with any biomedical intervention they tried. Hopefully, if you have been doing this for a while, you know that every kid on the spectrum is different. What works for one kid may or may not work for another kid. Sorry to hear low dose AC chelation did not work well for you.

Also no matter what anyone says, if I saw really bad effects from an intervention, then I would stop immediately. To me, this is just plain old common sense.

The key is to distinguish between something that only causes negative effects vs. something that causes negative effects while also showing benefits in other areas. For example, when I started MB12 shots with my daughter, I noticed a lot of benefits but there were also negative effects like hyperactivity, mouthing objects, being more stubborn etc. Fortunately, the negatives faded away over a period of time. When I evaluate an intervention now, I try to see if there are positives as well as negatives. If there are negatives, are they tolerable or intolerable? If they are tolerable, then I would keep going for atleast 4-6 weeks before making a decision on continuing that intervention.
Last edited by Pirsig on Thu May 14, 2015 8:30 am, edited 2 times in total.

FatherOf2
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Re: Focus, Echolalia, Self Stim Beh, Anxiety - help!!!

Postby FatherOf2 » Wed May 13, 2015 11:31 pm

Chelation for us was a good start. We started with 5mg of DMSA every 4 hours on weekends. We supplemented with minerals, vitamins, Milk Thistle, ACE - everything that Andy recommended. On 2nd and 3rd rounds ds started intermittently using potty, we were so happy that increased the dose to 6 and then 8mg. On 5th round he went berserk: defiance through the roof, tantrums every hour. Pre-school complained, wanted to move him to severely disabled room. After 1.5 months he calmed down. We tried 6th round on 6mg DMSA. Same thing repeated. 1.5 months later, after defiance reduced, we tried 7th DMSA round and again got defiance through the roof. Two months later, thinking that DMSA was not good, we switched to DMPS and got exactly the same defiance and tantrums. After that 8th round, we didn't try anymore. I still can't figure out why my son reacted so badly. I wish it worked for us. By the way, our son's hair test never showed any heavy metal problems even by the Andy's counting rules, except for a very high Uranium.

Pirsig
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Re: Focus, Echolalia, Self Stim Beh, Anxiety - help!!!

Postby Pirsig » Fri May 15, 2015 2:29 pm

Fatherof2,

Do you mind letting Andy Cutler know about your experience with low dose chelation? Unlike traditional MD's and government health officials, I found him to be really interested in knowing about any negative effects of following his protocol.

Your experience might help him learn something new and that might help kids in the future.

FatherOf2
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Re: Focus, Echolalia, Self Stim Beh, Anxiety - help!!!

Postby FatherOf2 » Fri May 15, 2015 2:57 pm

Pirsig wrote:Fatherof2,

Do you mind letting Andy Cutler know about your experience with low dose chelation? Unlike traditional MD's and government health officials, I found him to be really interested in knowing about any negative effects of following his protocol.

Your experience might help him learn something new and that might help kids in the future.

How can I reach him?

Pirsig
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Re: Focus, Echolalia, Self Stim Beh, Anxiety - help!!!

Postby Pirsig » Sat May 16, 2015 2:22 am

Fatherof 2,

I posted your question on the frequent dose chelation group and got this response from an experienced poster. Hope this helps.

---------

From the small amount of information given in your post it sounds like the person was using doses of chelator that were too large for the child at the time. He started at 5 mg doses and that seemed to be ok. Doses were increased too quickly (see Andy's posts in autism mercury archives and the Fight Autism and Win book.... they suggest *many* rounds *without* side effects before increasing). When there were difficulties at 6 and 8 mg dose then that indicates that the doses are too high for him and must be reduced.

I am a large adult. I started at doses of DMSA or DMPS that were less than the recommended 1/8 mg/lb. One could say that I "went beserk" at end of rounds. Luckily I didn't have to go to school so I stayed in bed! The solution for me was to use lower doses of chelator. As I reduced doses I found that there were doses that were manageable and if doses were lowered further a dose could be found with no side effects.

There also can be problems that are not being addressed. There are lots of possibilities. To really say anything meaningful one needs to know a lot more about the history of the child. One common problem has to do with seizure activity. If there is any type of seizure activity (even if mild) that must be addressed *before* chelation. In my case I was having what appeared to be absence seizures. Addressing this problem helped me to tolerate chelation.

When a hair test does not meet counting rules that does NOT rule out mercury toxicity. When the majority of mercury is in the brain the person is toxic but the test might not meet counting rules. This is common. When a test does not meet counting rules the next step is trials of chelation. This child had a reaction with trials of chelation which confirms toxicity.

Your friend could obtain the Fight Autism and Win book and join one of their support groups.

The person can email Andy directly (his email address can be found on the drop down menu on any of his posts) or through the mail
"Amalgam Illness:" Diagnosis and Treatment of Mercury Poisoning, Fibromyalgia, Allergies, Chemical Sensitivity and Chronic Fatigue
"Amalgam Illness:" Diagnosis and Treatment of Mercury Poisoning, Fibromyalgia, Allergies, ...
Mercury poisoning fibromyalgia chronic fatigue chemical sensitivity autism hyperactivity Amalgam Illness Diagnosis and Treatment A book on how to cure mercury poisoning
View on www.noamalgam.com
Preview by Yahoo


Don't be surprised if he doesn't have time to answer... he is a very busy man... in high demand. Your friend could ask his doctor to consult with Andy and ask Andy for a consulting package.

Linda

---------------------------

FatherOf2
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Re: Focus, Echolalia, Self Stim Beh, Anxiety - help!!!

Postby FatherOf2 » Sat May 16, 2015 10:53 am

Pirsig, I appreciate your effort to help me understand why my son had such reaction to DMSA and DMPS. I don't think the reaction was related to the fast increase in dose because returning to the low dose still caused behavior explosion. I see seizure activity mentioned. My son has an abnormal EEG. So, here is the list of possible reasons for my son's reaction to chelation:

1. Before chelation, he was deficient in iron, boron, manganese, and chromium. Perhaps further depletion of one of these essential minerals caused the reaction. I found an article on web written by psychiatrists who reported found a correlation between berserk behaviors in patients and lack of manganese. They mentioned that giving zink to these patients only aggravated things because zink tends to crowd out manganese. Giving these patients high doses of manganese resulted in improving behaviors over the course of several months. They pointed out that building up a normal storage of manganese takes months. Chelation can remove essential minerals pretty fast, but restoring them takes months. Interestingly, my son negatively reacts to zink (increase of irritability). So, perhaps this theory might be correct for him. Chromium regulates blood sugar and mood.

2. Andy's recommended mineral supplementation during chelation only includes magnesium, zinc, molybdenum and selenium. It excludes copper and manganese. Copper is considered a bad metal by all DAN doctors, but it is needed for proper MAO functioning. Increase in neurotransmitters levels from malfunctioning MAO is the cause for aggressive behaviors as in people with the warrior gene.

3. Circumin also causes increase in irritability in my son. This may point out to some sort of intolerance to sulfur although he is OK on Taurine.

4. Perhaps adrenals were depleted. But I didn't see any improvements from ACE.

5. Perhaps yeast overgrowth. But treating with Nystatin and Ampho B didn't help.

6. Now, after your post, I started thinking about abnormal EEG. Perhaps chelation reduces threshold to seizures or increases epileptiform activity. Interestingly, in early 2013, a 24hr-EEG showed only 2 fast discharges in my son. We did chelation at end of 2013. At the end of 2014, 24hr-EEG in my son showed hundreds of spikes.

Overall, I think chelation can be dangerous in autistic children. Blindly recommending it to anyone is irresponsible.

Pirsig
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Re: Focus, Echolalia, Self Stim Beh, Anxiety - help!!!

Postby Pirsig » Sun May 17, 2015 12:18 am

FatherOf2 wrote:
Overall, I think chelation can be dangerous in autistic children. Blindly recommending it to anyone is irresponsible.


I think andy would agree with you that it's not safe for 100 percent of the kids who try it. His low dose protocol was designed with safety in mind but I read one of his posts where he said it was safe for about 95 percent of kids but a small percent did show adverse effects.

I personally would never tell a parent to do something - I would just ask them to do their research and make a decision based on all available information. I was completely aware of the risks before I started chelating my daughter and fortunately, she has been doing great so far.

FatherOf2
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Re: Focus, Echolalia, Self Stim Beh, Anxiety - help!!!

Postby FatherOf2 » Sun May 17, 2015 1:25 am

Pirsig wrote:I read one of his posts where he said it was safe for about 95 percent of kids but a small percent did show adverse effects.

Nobody really measured the percentage of kids for whom chelation works. Andy's goal is to sell his book. He has been writing a second book about successful personal stories. Obviously, he will "forget" to mention negative stories. The FAW website is closely moderated, every message is read by moderators before being posted. Often they decide not to post messages if they go against the moderators vision. I've seen many parents who report there behavior explosions from chelation. The advice is the same all the time: try ACE or OLE. I would estimate the % of kids for whom chelation doesn't cause behaviors at about 60-70% and for those for whom chelation does something positive at about 30% or even less. Proponents of chelation say that you are not supposed to see any improvements until after at least 1 year of chelating. But 1 year is a long time, and improvements will almost certainly come, only perhaps from the natural development. I can't imagine how parents can go the FAW website and get an advice about chelation from moderators who have no degree or formal medical training and whose goal is to sell you a book and supplements from their own internet store "everything spectrum". Andy doesn't have a formal medical training either, he is a chemist. Asking him a health-related question is like asking the same question a pharmacist. Those who actually have a medical degree and practice medicine will tell you that if mercury or other heavy metals ware present, you (1) wouldn't see an immediate effect from chelation because it takes time to remove those toxins and (2) if you stop chelation, the gains should stick because the toxins have left the body. But many who see gains from chelation lose them after stopping it, suggesting that the gains were due to anti-oxidant action of chelators and not from removal of toxins.

Santosg
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Re: Focus, Echolalia, Self Stim Beh, Anxiety - help!!!

Postby Santosg » Sun May 17, 2015 4:19 am

In terms of chelation, I think Fatherof2 shares a very important story. Certainly, in reading his old posts you find that he was very open to the idea of chelation but experienced very negative consequences from it. That being said, it is very hard to draw broad conclusions. I have been chelating my son since January. It was necessary, given his hair and porphyrins test. I have only experienced positives. Like many parents, I was a bit 'scared' to begin chelation. Now, my only regret is that I did not start sooner. For the majority of children, I think it has either a positive or neutral effect, save for yeast. That in no way dismisses the very negative experienced that should have a platform. But everything has to be taken into context and compared.

That being said, in terms of chelation, only a very small number of autistic children have been chelated. I believe I read that is was only about 4 percent of all autistic children. Yet, among parents that have been actively engaged in biomedical interventions, it has had a very positive success rate.

My son responded very, very poorly to l-glutamine. Why? I am not sure. Other people have had great success with it.

I think that everyone should make a decision to chelate or not to chelate based on the test results and medical history of their child. I don't think that low dose chelation is extreme or, in the broad majority of cases, dangerous. James Adams said that DMSA at about the same risk as asprin. He went on to say in an interview that we are faced with a medical establishment that gives absolutely no thought to putting young children on powerful anti-psychotic drugs that are not FDA approved for use in children but absolutely refused to prescribe DMSA that has been FDA approved for use in children. It is a twisted sort of logic. And sadly, I see the anti-chelation bias growing stronger all the time, from the decision to prevent the sale of DMSA in store to even a shift among DAN doctors away from chelation purely because of a fear of being sued.

I few months ago I had a conversation with a doctor who now only recommends natural products to help the body 'detox.' Well, if you have mercury, there 'ain't' no way you're body is going to get it effectively out without a powerful set of chelators. Sorry, if it were as simple as that, we would not have a problem with heavy metals to begin with.

In terms of Cutler not being a doctor, I don't see that as a negative. The medical establishment in this country is a joke. The big mistake we make is believing that doctors are scientists. They are not. Doctors effectively are trained to administer a protocol. Nothing more. Its as simple as linking a 'problem' with a preordained solution. In this respect the people who run the chelation forums are no different than doctors. If you go to your doctor with a problem, he tells you do A,B,C. If that does not work, he usually has very little to offer outside of the A,B,C set of recommendations. Doctors are mechanics, not engineers. They don't engage in original research. Insights from labs are rarely translated into meaningful therapies for patients. They just go around giving the same drug for 30 years and call it the 'most cutting edge treatment.' There is a lot of innovative medical research conducted in this country, with the vast majority of it being done by people that are not medical doctors. More importantly, even when something interesting is discovered, it rarely becomes something that you're doctor would know about, recommend, or prescribe. Ask the average pediatrician about the beneficial effects of carnosine or NAC on autistic children and they'd not even be able to tell you what these supplements are.

FatherOf2, if uranium is a concern, this might be something worth exploring. I don't think you'd have to worry about the same negative reaction that DMSA/DMSP brought about.

http://www.ncbi.nlm.nih.gov/pubmed/17627956

Inositol hexaphosphate: a potential chelating agent for uranium.
Cebrian D1, Tapia A, Real A, Morcillo MA.
Author information
Abstract
Chelation therapy is an optimal method to reduce the radionuclide-related risks. In the case of uranium incorporation, the treatment of choice is so far i.v infusion of a 1.4% sodium bicarbonate solution, but the efficacy has been proved to be not very high. In this study, we examine the efficacy of some substances: bicarbonate, citrate, diethylenetriamine pentaacetic acid (DTPA), ethidronate (EHBP) and inositol hexaphosphate (phytic acid) to chelate uranium using a test developed by Braun et al. Different concentrations of phytic acid, an abundant component of plant seeds that is widely distributed in animal cells and tissues in substantial levels, were tested and compared to the same concentrations of sodium citrate, bicarbonate, EHBP and DTPA. The results showed a strong affinity of inositol hexaphosphate for uranium, suggesting that it could be an effective chelating agent for uranium in vivo

Winnie
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Re: Focus, Echolalia, Self Stim Beh, Anxiety - help!!!

Postby Winnie » Sun May 17, 2015 10:14 am

Pirsig wrote:When a hair test does not meet counting rules that does NOT rule out mercury toxicity. When the majority of mercury is in the brain the person is toxic but the test might not meet counting rules. This is common. When a test does not meet counting rules the next step is trials of chelation. This child had a reaction with trials of chelation which confirms toxicity.
^This sounds like yet another ridiculous yarn from one of the many merchondriacs who has been hanging out on the frequent-dose and autism-merc lists forever. Whatever test (even a questionable test to begin with) is used, there must be a way to construe mercury toxicity from it, no matter how kooky the explanation.

Cutler hasn’t had anything to do with children’s brains or medically treating children with autism – his background is chemistry, not biomedical science or human physiology. His claims are pulled from (apparently) thin air (interview on this thread), or otherwise from anonymous testimonials on the internet. His flagship poster on these groups for nearly a decade (Rebecca aka ladyshrink222 aka Rebecca Cochran aka Rebecca Claire) was finally exposed as a fraud trying to make a buck a few years ago (see here and here).

Pirsig wrote:Your friend could obtain the Fight Autism and Win book and join one of their support groups.
These ladies (Tressie Taylor and Jan Martin) were teamed up with ^Rebecca (also for profit), and didn't seem to mind the problems with her lies and business practices until these were publically exposed. Then they ditched and republished the Fight Autism and Win book (without her name) once Rebecca Cochran was exposed as a fraud (bad for business I guess). Not the brightest individuals IMO, and certainly not accurate sources of info. You can search this forum with their names for more info about them. And, as I recall (correct me if I'm wrong), also the chicks who banned Fatherof2 for posting his son's chelation experience. Very cult-like mentality.

So don’t question Cutler, the claims, or the kooky explanations on these lists – a merchondriac will whack you. :wink:

***I lean toward thinking (reported) gains on this protocol have little to do with mercury "removal" and perhaps a lot more to do with antioxidant properties of ALA -- perhaps that, but foremost (and obviously) the passage of time (years)
Winnie
"Make it a powerful memory, the happiest you can remember."

Pirsig
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Re: Focus, Echolalia, Self Stim Beh, Anxiety - help!!!

Postby Pirsig » Sun May 17, 2015 2:59 pm

FatherOf2 wrote:
Pirsig wrote:I read one of his posts where he said it was safe for about 95 percent of kids but a small percent did show adverse effects.

Nobody really measured the percentage of kids for whom chelation works. Andy's goal is to sell his book....


Ok. I agree that if you are convinced with the above, you should completely stay away from chelation and also tell any other parents or friends that you know about your experience.

I would respectfully disagree with you on the above statement about Andy's goal and some other points in your post, but I completely respect your right to share your opinions here and other forums.

I am not on this forum to argue or attack other parents who are already in a difficult situation, so my apologies in advance for choosing not to continue this discussion.

varen2
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Re: Focus, Echolalia, Self Stim Beh, Anxiety - help!!!

Postby varen2 » Mon May 18, 2015 2:09 am

Hi,

You have to try "Feast without Yeast" diet and Nystatin for your son.

My son has been on "Feast without Yeast" diet and Nystatin for 2 months now and he is almost free of all autistic symptoms.

Here is a topic from another mom explaining why this diet is BETTER than GFCFSF and SCD diet. Apparently, SCD diet includes foods full of mold and toxins which cause repetitiveness, slow brain function, and promote yeast overgrowth.

Just a quick quote from her post: "My son is, with this diet and Nystatin, finally what I would consider “fixed!” By fixed I mean he is able to sit at a table and attend to four hours of school without tuning out. He can write a full page of cursive without quitting. His gut is fixed. The night sweats are gone—this was a biggie, and our doctor thought it was metals. I now think it was yeast or mold. We are still getting big die-off symptoms, and the “yeast smell” many days, so there’s still lots in there, but each day his behavior is better and better. "

viewtopic.php?p=121287


I absolutely agree her post.
From my own experience....

My son was very autistic and had no speech when he was 2 years old. He was extremely repetitive and used to get stuck on doing the same thing over and over.

He got rid of all autistic symptoms and repetitiveness with "Feast without Yeast" diet and Nystatin.

He is now 2 years and 6 months old, and he is almost free of any autistic symptoms. He is saying 4-5 word sentences, his eye contact is excellent. He follows my directions, he is curious about everything. Some days he is a bit repetitive (he is not completely free of yeast yet). But most days he is just fine, he is progressing, learning, and just being a happy boy.

When my son started a GFDFSF diet, he was doing fine. His eye contact got better and he was generally more with us. However, he had some bad days and some good days. Something was setting him off.

We tried multivitamins, probiotics and GFDFSF diet. It helps somehow, but doesn't treat autistic symptoms completely.
With "Feast without Yeast" diet and Nystatin, we had immediate and noticeable results. I believe that with this diet my son will be free of all autistic symptoms within a year or so.


Author of this diet, Dr. Bruce Semon has an autistic son. He treated his son and since then many other kids. He says that his diet and treatment worked for every autistic kid he's ever treated.

My son had an OAT Urine test, Stool test and Hair test for heavy metals from the Great Plains Laboratory.
Urine test showed high levels of waste product of Candida yeast overgrowth.
Stool test didn't show Candida yeast , and in most cases stool test doesn't detect yeast as it doesn't survive in large intestinal.
Hair test for heavy metals didn't show heavy metals.


"Feast without Yeast" diet is not as difficult or strict as SCD diet. However, this is a long-term treatment. Most kids have to stay on this diet for a few years. It works so well for my son and I believe this should help other kids as much as it helped my son.

A few notes on the diet:

1) Diet works only in combination with Nystatin. Diet doesn't work on it's own.
1/3 of success is due to the diet and 2/3 of success is due to Nystatin.
2) All multivitamins and especially vitamin B have to be discontinued. They interract with Nystatin and the medicine doesn't work if vitamins are taken during the treatment. Vitamin B6 and B12 are made from yeast (or made with the help of yeast), so you're pouring gasoline on the fire when you take high-dose Bs (like B6 or B12) orally.
3) You need to read the book "Feast without Yeast" to implement the diet. 

A few notes on Nystatin:

1) We got Nystatin prescription from our regular pediatrician. We showed him OAT Urine test results and the book "Feast without Yeast". He gave us the prescription and 3 refills without any problems. We came back for another prescription with my son and showed him the progress my son is making with Nystatin. He was surprised by his progress, and gave us a second prescription with 2 refills.

2) You have to make sure your child gets a full dose of Nystatin every day. The drug tastes very bad. I have to use a syringe to spray this drug to my son's mouth. He doesn't like it, so, I give him stickers every time he takes Nystatin and he forgets about the "aftertaste" right away.

This is the only way to give Nystatin to your child. Giving it with water or with other vitamins won't work. Your child will probably refuse to take it as it's very bitter. But it helps to get rid of all autistic symptoms, so it's worth it.


Here is the website of this doctor:

http://nutritioninstitute.com/

This is a short explanation and dosage of Nystatin:
http://www.greatplainslaboratory.com/bo ... sect2.html


Please don't start any chelation without proper tests. It's dangerous and it doesn't help get rid of autistic symptoms completely. Try to change your son's diet according to this article by Dr. Bruce Semon:
http://www.greatplainslaboratory.com/bo ... sect2.html

If you see positive changes on Stage 4 of "Feast without Yeast" diet, then go ahead and find the way to get prescription for Nystatin.

Before starting any chelation, get your son tested for heavy metals (Hair test for heavy metals). Most likely, he doesn't have any heavy metals and he just needs a different diet and a proper treatment for yeast and leaky gut.



Let me know if you need any additional info on the diet. I will be happy to help.


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