What would you have done differently at the beginning?

Discuss autism diets and biomedical treatments of autism.

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monkeyman
Posts: 95
Joined: Wed Jan 28, 2015 1:48 pm

What would you have done differently at the beginning?

Postby monkeyman » Thu Mar 19, 2015 6:26 pm

My 18 month old son was recently diagnosed, and while we are moving forward with therapy, basic biomed, ruling things out with testing, etc., I'm terrified not to maximize this crucial time in his development.

So, I'm asking all of you who have been doing this longer than me and know a lot more.

What would you do differently at the beginning if you could start over?

What have you done that you would not do again, or do in a different manner or sequence?

Thanks in advance. I look forward to being a contributor on this forum!
Last edited by monkeyman on Thu Mar 19, 2015 9:57 pm, edited 1 time in total.

andyseattle
Posts: 151
Joined: Wed Jan 29, 2014 4:20 am

Re: What would you have done differently at the beginning?

Postby andyseattle » Thu Mar 19, 2015 9:21 pm

Make these lists faster than this.

Begin Chelation
add Coezym B1 + Essential amino acids
add Iso Whey protein : Bluebonnet
add Phoschol + Isophos

monkeyman
Posts: 95
Joined: Wed Jan 28, 2015 1:48 pm

Re: What would you have done differently at the beginning?

Postby monkeyman » Thu Mar 19, 2015 9:56 pm

Thanks Andy,

I've heard a few people say they wished they started chelating earlier.

My DAN! doctor says we can't even start to chelate until the gut is healed. I'm a little hesitant to chelate anyhow, just a father's protective instinct I guess. It all sounds so invasive, sort of a last line of defense strategy (though that's an uneducated opinion on my part).

Are there clinical indicators you would need to see before chelating?

Blood tests (which I know only measure recent exposure) all showed very low levels of mercury (<1 ng/mL), lead (<2 ng/mL), arsenic (<40 ng/mL) and cadmuim (<2 ng/mL).

I've heard good and bad about hair testing.

Is a provoked test something you've done? Again, pros and cons abound.

IF my son is metal toxic, of course I want to remove them ASAP. I just want to make sure we're as confident as possible before trying.

B1 is definitely at the top of my list of supplements to try.

Can you tell me a little about the positives you had with the others you mentioned?

Thanks
MM

kulkulkan
Posts: 2075
Joined: Tue Mar 13, 2012 1:37 pm

Re: What would you have done differently at the beginning?

Postby kulkulkan » Thu Mar 19, 2015 10:41 pm

I would have focused more on RDI or Son Rise type therapy (for social) - these try to address the core deficits of ASD, not just ABA which is more helpful for cognitive and language development. Our son breezed through the verbal behaviour ABA programs, so in hindsight we should have focused more on social.

AC chelation earlier the better provided can tolerate it. We used porphyrin markers as proxy for burden / damage. Also MB12 earlier the better as well - at least to test whether responder or not.

andyseattle
Posts: 151
Joined: Wed Jan 29, 2014 4:20 am

Re: What would you have done differently at the beginning?

Postby andyseattle » Fri Mar 20, 2015 12:26 am

You gut will be really difficult to heal if you still have heavy metal in your body.
I would do together.
Healing gut + chelation + supplements in the same time.

Santosg
Posts: 196
Joined: Sun Aug 17, 2014 5:33 am

Re: What would you have done differently at the beginning?

Postby Santosg » Fri Mar 20, 2015 5:49 am

Agree with the above posters. If heavy metals are present it has to be priority number 1. Beyond that, I think that having a strong emphasis on physical activity is important. Have him walk outside for an hour a day.

kulkulkan
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Re: What would you have done differently at the beginning?

Postby kulkulkan » Fri Mar 20, 2015 11:58 am

Agreed on the physical activity. A number of studies show that exercise promotes neurogenesis in addition to helping with balance and control. Wish we had done more of that at 2 yrs but didn't as we didn't appear to have gross motor issues.

determined-dad
Posts: 46
Joined: Mon Jun 18, 2012 8:54 pm

Re: What would you have done differently at the beginning?

Postby determined-dad » Fri Mar 20, 2015 1:39 pm

We would have switched the whole family to GAPS / paleo years earlier. Every kid is different so I'm only speaking for our situation. We had major gut issues and viral regression at 3.5 years old. We did biomed GFCF for a year (no chelation) and didn't make much progress. After that we did GAPS and eventually transitioned to paleo + some rice. Diet was huge for us. It allowed us to cut his supplement load way down and what was left was more targeted. DS is 6.5 now, isn't recovered, but is in a main stream kindergarten classroom with minimal support. We've tested for metals repeatedly and have never met the AC counting rules or have anything show up high on a hair or blood test. We did trial trans-dermal glutithione + TTFD at our DAN's recommendation and it had no impact one way or the other outside of the terrible smell.

pingumamma
Posts: 113
Joined: Wed May 23, 2012 12:42 pm

Re: What would you have done differently at the beginning?

Postby pingumamma » Fri Mar 20, 2015 1:48 pm

I discovered my sons dairy intolerance quite early, but all our testing was showing gluten to be fine. I wish I had done a trial with gluten elimination at the same time. This is a big regret for myself as he has a major gluten intolerance. Diet has been a pretty big deal for us. We are also soya and banana free now. If you have any uncertainty with foods I would trust your instinct and eliminate for a while and see how things go.

monkeyman
Posts: 95
Joined: Wed Jan 28, 2015 1:48 pm

Re: What would you have done differently at the beginning?

Postby monkeyman » Fri Mar 20, 2015 4:12 pm

Kulkulkan, you mention Floortime and RDI. I've watched a few of the Floortime videos on their site, and it's interesting.

Are you saying the ABA was too "clinical" and not "friendly" enough? Too focused on teaching skills and not so much on building eye contact, reading faces, connecting with others?

Who did you do the porphyrin testing with? My wife is concerned that chelation is very hard on the body (not that a toxic load of metals isn't), and we want to make sure it's indicated. Has anyone done a challenge test to confirm? What results did you see from Cutler's chelation that confirmed it for you? Was it ALA and DMSA?

Andy and Santos, you're also proponents of chelating. It makes sense to me to get it out as soon as possible before it gets further entrenched in the body. I would love to hear what chelation protocols worked for you, as well as the positives and negatives you saw along the way. From a few posts/blogs I've read, chelation can be fairly short (months, not years) for kids as young as my son.

We are getting him outside a lot (backyard, park, gymnastics class). He has some balance/gross motor issues, so I really want to continue to push him in that department.

Determined Dad, we have been pretty hard-core GFCFS since December. Surprisingly (and confusing), we took my son off probiotics 3 weeks ago and the rest of his supplements a week ago (Vitamin D, cal/mag, fish oil, Vitamin E, digestive enzymes), and his poops have become way better (2-3 times a day, mostly semi or totally formed) and he's talking a lot more. His doctor didn't have an explanation for this. This is how his poops were prior to starting this stuff in December. We stopped everything to do a stool test, so we should get results in a few weeks. Does this sound like digestive issues may be minimal/absent?

Also, how hard has it been to implement GAPS? My son is only eating brown rice, grass-fed beef and chicken, organic pears and garbanzos, homemade GF granola, and organic fruit pouches/squeezers. How close to GAPS are we already?

I am really confused (and more hesitant) about biomed with his improvement without any supplements. His doctor suggested we re-start only the fish oil and Vitamin D until the test results come back.

Pingumamma, we cut out the gluten and dairy from the start, and it seems to be working. Of course, I'll never be absolutely sure, because it's so hard to tell what helps and what doesn't. Why did you remove bananas? We have as well, and he used to LOVE them. Maybe that was a sign that he was sensitive to them.

Thanks everyone! Please keep posting, I really appreciate it.

MM

kulkulkan
Posts: 2075
Joined: Tue Mar 13, 2012 1:37 pm

Re: What would you have done differently at the beginning?

Postby kulkulkan » Fri Mar 20, 2015 4:42 pm

We did the porphyrin test at the French lab as well as Great Plains. Do a search.

The RDI program doesn't just list a few core deficits but also a hundred of smaller less noticeable deficits by age which are cognitive and social in nature. We did floortime but that is not as organized by age core deficit and skill level. vb-ABA is great but doesn't focus on the social as much. The point isn't teaching eye contact as a behaviour but rather teaching social referencing (looking at others for social cues). ABA is more focused on teaching cognitive and language skills whereas RDI and son rise are focused on teaching core skills so kids can learn themselves. One can do both at the same time. I wasn't worried about the robotic teaching. Our instructors used floortime to teach the VB curriculum as well.

monkeyman
Posts: 95
Joined: Wed Jan 28, 2015 1:48 pm

Re: What would you have done differently at the beginning?

Postby monkeyman » Fri Mar 20, 2015 4:50 pm

Thanks Kulkulkan,

RDI looks very interesting.

I'm wondering if it's appropriate to combine programs. We've seen some good progress from our ABA program, so would we integrate principles of RDI into it, switch solely to RDI, or do some time of ABA and some of RDI?

Have you, or anyone you know, had success customizing a program with elements from multiple approaches (ABA, Floortime, ESDM, RDI, etc.). I guess they're all ABA programs in some fashion.

Thanks!
MM

Santosg
Posts: 196
Joined: Sun Aug 17, 2014 5:33 am

Re: What would you have done differently at the beginning?

Postby Santosg » Sat Mar 21, 2015 2:31 am

I don't have a lot of experience with chelation. I am currently on the 8th round (3 days of continuous low dose chelation per AC protocol). My son has done very well with it and has experienced gained since we started that are directly tied to chelation.

Among the things that I wish I had 'known' sooner is that there is little to fear from chelation. I recently heard an interview with James Adams--a big pioneer in autism research--who stated that DMSA was about as safe as aspirin. He said he found it bizarre how readily people would put their children on drugs that had never been approved for use in children but were hesitant to try DMSA, a FDA approved chelator specifically tested for safety on children. Chelation does require periodic blood monitoring. Obviously you must make a decision based on the needs of your child, but I see very little reason to have a fear of chelation. If you do pursue it, however, I really do recommend you do follow the AC protocol.

Tyra
Posts: 1
Joined: Mon Jan 20, 2014 10:40 am

Re: What would you have done differently at the beginning?

Postby Tyra » Sat Mar 21, 2015 4:10 am

andyseattle wrote:Make these lists faster than this.

Begin Chelation
add Coezym B1 + Essential amino acids
add Iso Whey protein : Bluebonnet
add Phoschol + Isophos


Hi andyseattle,

How much did you give Iso Whey Protein? and what brand Essential amino acids did you use and how much?

Thanks

makingitpossible
Posts: 1260
Joined: Mon Nov 12, 2012 10:25 am

Re: What would you have done differently at the beginning?

Postby makingitpossible » Sat Mar 21, 2015 6:55 am

This is a hard one because what works for one kiddo doesn't for others. One kids leap and bound is anothers regression. With that said here is what I would have done differently:
Skip intro GAPS and gone straight to Paleo. We tried to starve yeast and in the process filled our daughter with lead filled bone broth and made her close to going into an insane asylum and huge regressions. Our daughter needs some carbs/fruit for her serotonin production and diet changes should probably not be so severe.
I would have tried other forms of chelation first before AC. AC didn't work for us and undid any progress with gut we may or may not have gotten with GAPS.
I would have started DMPS and IV caEDTA sooner.
I would have not tried the thousands of dollars worth of synthetic supplements and just did whole food supplements from the beginning with a couple minor exceptions (B12, folinic, etc).
Not gone so crazy with the probiotics and slowly introduce them.
Done ONE THING AT A TIME!
Do more natural alternative things like chiropractor, aromotherapy, etc.
Focus more on getting toxins out of the environment (remove carpets, air filters, water filters, all organic food, etc) than on supplements.
Move to Minnesota much earlier and get her in OT, speech and behavioral therapy much sooner. In NC at the time nothing was available or covered by insurance.
Not thought of it as a cure but as fixing her body and undoing the damage of GMOs, vaccines, toxins.
Been more of a mom and less of a doctor and support her emotional needs.
This is too long of a list! I am sure I would have done a lot more differently than this but I honestly don't like thinking about it. Progress is sure to come but it is a long road and for some too many mistakes are made.

monkeyman
Posts: 95
Joined: Wed Jan 28, 2015 1:48 pm

Re: What would you have done differently at the beginning?

Postby monkeyman » Sat Mar 21, 2015 10:56 am

Santos,

Nice to hear you've seen some gains already from AC chelation. Do you mind sharing what they are?

I'm more inclined to start what feels like a less invasive chelation protocol (oral as opposed to IV). Not that I wouldn't consider IV at some point, but oral seems like a logical first step.

Has anyone read the pyroluria post with all the responses? It's interesting to think about that as a potential cause of some of these symptoms, and there's some debate whether chelation should be a part of that.

I'm also interested if anyone has had an experience with B1 (thiamin). I've read a few accounts from well-respected members of this forum of great results with that as well.

And of course, where does chelation fit in with everything else. Do you need to have chelating agents circulating as you release metals with other methods?

A big one for me is, what did you do to prepare your child for chelation? Heal the gut, etc.

MakingItPossible,

What positives/negatives have you seen with the IV chelation? Anything of concern?

Doing one thing at a time is great advice. Of course, I want to do it all now to "fix" this, but rationally I know that's not the best way. My issue (and probably everyone's), is the intense emotional component to this.

What are some ways you did whole food supplementation with a Paleo diet. We're pretty limited on food choices at this time, so I wonder if we can make that work.

Interesting point about the probiotics. My son's been off them for three weeks for a stool test, and made a lot of progress since then (better poops, more talking). I agree, more is not always better.

We've done a lot of the environmental cleanup, but we still have carpets. Debating on taking them out. We have old hardwood under most of the carpet, which should be fine, but the large living room/therapy room would need new flooring. I'm concerned about tearing the carpet out and then the environmental mess/issues with installing a new floor. Any suggestions how to best go about this?

Any successful tips on fixing the body would be appreciated.

Thanks!
MM

FatherOf2
Posts: 1668
Joined: Mon Mar 11, 2013 1:37 am

Re: What would you have done differently at the beginning?

Postby FatherOf2 » Sun Mar 22, 2015 10:43 am

The question "What would you have done differently at the beginning?" will bring as many different directions as there are people on this board. At the end of the day, you will have a long list of things to try and will be deciding what to try first because it is not a good idea to do it all at once. So, knowing what helped some people really doesn't save you time from going through each intervention one by one. All kids are different and yours may not benefit from chelation as others did. To make you even more confused, here is my list of things I would have done differently at the beginning:

1. Start HBOT right away.
2. Give DMG in smaller doses than I did (<125mg) because larger ones caused head banging, which totally scared me from using DMG, but we saw good gains on smaller doses.
3. Give Piracetam, which we luckily did almost at the beginning (at 3) and it helped my son tremendously to gain speech.
4. Avoid chelation because it made my son extremely irritable to the point that his special-needs pre-school wanted to transfer him to the lowest functioning class. It took months to recover his behaviors and thousands of dollars in lawyer fees to defend my son's present academic placement.
5. Avoid all other supplements (including methyl B12 injections) and yeast treatments because most of them didn't work and only made my son's food taste like a chemical soup - what a torture!

monkeyman
Posts: 95
Joined: Wed Jan 28, 2015 1:48 pm

Re: What would you have done differently at the beginning?

Postby monkeyman » Sun Mar 22, 2015 1:37 pm

Thanks Father of 2,

I realize what works for one may not work for the other, and the suggestions are all over the place.

Still, it's been useful to research things that people liked/didn't like and look into them more.

I'm also trying to figure out what tests to do now. Any suggestions would be great.

HBOT for an 18-month old? My DAN! sees HBOT and chelation at the end of the line. Fix gut, treat for viruses, supplement, etc. before.

What did you get from HBOT that was great?

It makes sense to do HBOT and chelate ASAP if appropriate. But, I'm not a doctor and feel like I have to give some thought to her recommendations.

DMG I will look in to.

Piracetam looks intriguing, though there seem to be some possible side effects that scare me (seizures?)

I'm pretty concerned about doing something that causes a significant regression, because we've seen some positive progress to this point.

No B12? Seems like almost everyone has good things to say about that. Interesting to hear your thoughts on that and chelation. Goes to show you what work for each of our kids is way different.

Avoid all other supplements? Shouldn't we at least try some of the B vitamins, fish oil, Vitamins A, D, E and some other stuff before disregarding it?

Thanks for the post. Looking forward to hearing your thoughts.

MM

FatherOf2
Posts: 1668
Joined: Mon Mar 11, 2013 1:37 am

Re: What would you have done differently at the beginning?

Postby FatherOf2 » Sun Mar 22, 2015 3:02 pm

I don't see a problem of HBOT at 18 months. One parent on a different board shared a story of a girl who suffered from asphyxia while in her mother's womb and was born blind and all kind of physical and mental problems. They did HBOT a few months after birth and the girl started seeing. The parents got so excited, that they went through 4 rounds of HBOT and the girl significantly improved in all areas. So, if a brain injury from lack of oxygen or falling is the cause of autism, HBOT is the only thing you really need. The rest (chelation, anti-fungals, MB12 injections, vitamin B's) is just a waste of time. You can read my and others experience on HBOT on this forum. Some people are no longer here, so it is important to read old threads. Ineterstingly, Piracetam as HBOT enhances the blood flow in the brain. I never heard about seizures from Piracetam. It is considered one of the safest substances on earth: LD50 doesn't even exists.

I don't know your DAN! and whether he/she is acting in your interests or his/her own pocket interests. If I wanted a patient to keep coming to me year after year, I would too start very slowly.

Chelation did more harm than good for us. But it is all individual. My son in general reacts poorly to sulfur substances, including Curcumin. We are not the only parents who had such bad reaction to chelation. In all these cases, children become uncontrollable to the point that parents stopped chelation despite all things they tried to improve behaviors: anti-fungals, ACE etc. We did hair test before the chelation and never saw any problems with heavy metals or imbalanced metals according to the AC counting rules. I suspect that only a very small percentage of autism today is caused by heavy metals. What most people see from chelation is an anti-oxidant effect, and some smarter DAN! doctors agree on that. Some parents give their children ALA as a chelator, but mainstream sees it as a strong anti-oxidant.

B12 never helped us. Neither did other B's or vitamins. Again, it is all individual. If lack of vitamins is the cause of autism in your child's case, then you are lucky. All you have to do is to give multivitamins and do nothing else. Of course, you can spend years of healing the gut with anti-fungals and chelation before "the gut is ready to absorb vitamins". Keep in mind that many smart doctors say that the body will absorb as much vitamins as it needs. As long as the diet is diverse, you don't need to supplement much, IMHO.
Last edited by FatherOf2 on Sun Mar 22, 2015 3:17 pm, edited 1 time in total.

FatherOf2
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Joined: Mon Mar 11, 2013 1:37 am

Re: What would you have done differently at the beginning?

Postby FatherOf2 » Sun Mar 22, 2015 3:13 pm

A bit more about HBOT. I read a story about autism among horses. It may sound funny, but it does exist. The article said that vet doctors discovered that horses who were born through c-section were having higher rate of autism. The article said that the old theory that autism in horses was caused by asphyxia in mother's womb is being reconsidered in favor of a new theory that a newborn needs a pressure on the body during a normal delivery. What was interesting in this article is that at least vet doctors had A THEORY of autism in horses (asphyxia and lack of oxygen), but human pediatricians have no theory at all! Of course, if such theory existed, and lack of oxygen was named as the main cause of ASD, then HBOT would have been a recommended treatment and insurance companies would have to cover it, which is obviously not profitable for them. Instead, insurance-driven FDA writes an article how HBOT is unproven and can be dangerous as a treatment of autism.


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