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#1 mermaid'smom

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Posted 06 June 2017 - 03:06 PM

Some of you may remember me...and not long ago I posted an update about my daughter but soon after things just went sideways (in a good way!!) and I wanted to come share here because so many of you were very helpful to us!  This will get long - Hang in there and you will see why you all need to know this!

Background: My daughters list of diagnosis are as follows (and in order): Chronic constipation, anxiety, insomnia, ADHD, Dysphagia (swallowing) SPD, OCD tendencies, Dyspraxia, Visual Processing Disorder, Central Auditory Processing Disorder, Gifted, Vertigo, Low B12 and low Iron. And a host of cognitive issues like processing speed, memory etc.

 

As a young child she had some sensory issues and anxiety, but aside from that she was very typical and always in the top of the class. She was always a picky eater but all of a sudden at 10 she was no longer able to swallow food. That was when the nightmare started and after that we just kept getting diagnosis after diagnosis layered on.  I have always considered her as SPD and most of these issues were just symptoms of that diagnosis. Her Auditory Processing Disorder was really bad. She only had 40% processing in one ear and 65% in the other. She wore an FM system and without it could literally hear nothing. She was also VERY sensitive to light and sound. Always clamping her hands over her ears and grimacing in pain. Her sensory issues had the greatest impact on our lives.

 

Her chronic fatigue has been debilitating. She has barely been able to attend school this year. Her brain fog is so bad that for most of the year she had no idea what day of the week it was and a simple sentence like “Do you want chicken for dinner?” was too complex. By January 2017 she was basically a zombie. She just slipped away and we were basically a family of 3 with a girl who never spoke to anyone and just sat in her therapy swing for hours upon hours zoned out.


I mentioned on here in my last update that 3 months ago I put my daughter on a GF/DF diet (and some supplements – Probiotic, Inulin, Omega 3 and Magnesium citrate) and the difference was literally unbelievable! Within no time her issues just melted away and she no longer had severe sensory issues or chronic fatigue. It was like she just woke up. She was a new person. When I put her on the diet I was hoping to resolve some digestive issues and maybe alleviate some fatigue etc. So I was SHOCKED when the most noticeable improvement was that she could hear EVERYTHING! Her hearing was restored 100%.
Then boom one day a few weeks in I noticed some sensory stuff happening again. The next day things were worse and it snowballed. We lost EVERY success. Without warning or explanation.

I was GUTTED. And confused. I knew that we had begun to allow her to "cheat" a bit with dairy so I got strict again and took it all away. Sat and waited for the improvements to come back but nothing. In fact as the days passed she got worse. Naturally I assumed that she must also be intolerant of other foods and I needed to figure out what they were.

Out of desperation I went to a Naturopath who suggested a Paleo diet and explained that a Paleo diet contained no inflammatory foods and that once we got her sorted we could consider adding things back in and see how she reacted. She also asked about what the supplements were that we were giving her and made some minor adjustments. Off we went full of hope and expecting things to improve.

And there was a VERY slight improvement over the next few days. But slight. Her energy did seem to improve but it was NOTHING like the almost 100% recovery we had already seen. But we figured she just needed time to heal so we waited it out. And we waited. And waited. Then it went from bad to worse. Within 2-3 weeks she was back to being bedridden, sensory issues through the roof. Severe stomach pains etc. THEN she got vertigo again! It was super awful. She was basically non functioning again.

We went to the Dr. for the vertigo (my suspicion was that she had an inner ear infection based on some things that I noticed) the Dr. looked in and confirmed that she did. Said she had fluid in one ear but that it was not bad enough to warrant antibiotics. Instead she prescribed a steroid nose spray. She said the steroid would reduce the inflammation (this is VERY IMPORTANT for later in the story!) and allow her ear canals to shrink back and let the fluid drain out of her ear.

Off we went.

So now I start researching. I begin to wonder if maybe it isn't something she is EATING - but rather something that I am GIVING her?? And I know that her body (her ear anyway) is inflamed but that she is on a diet free of anything that causes inflammation?? I also know that everyday she is getting worse, that her stomach is in agony.  I start to think that it is stomach related - and constipation was the first issue that she ever had. I uncover something called SIBO (small intestine bacteria overgrowth). I read up and it makes sense with what I am seeing. As a result of reading up on this I stumble upon some info about a Dr. in Arizona named Dr. Nemechek.

He is currently garnering a LOT of attention over a blog post he wrote claiming he can reverse Autism. In fact he can reverse MOST childhood issues. He was given a grant to research HIV/AIDS and that research led him to realize that Autism is the result of SIBO. Bear with me while I explain in a VERY oversimplified manner:

He says that SIBO is when the bacteria in the COLON migrates up and starts to spread throughout the small intestine. This bacteria is not BAD (it does a great job in the colon) but I am going to refer to it as BAD moving forward. The bad bacteria overgrows in the sm intestine and in fact takes over reducing the number of good bacteria that are meant to live there. This bad bacteria releases something called propionic acid and excessive levels of this acid are harmful and in fact has a bit of a sedating effect on the brain. It interferes with the brain functioning properly and can result in developmental delays. Studies have shown that the tissue samples of Autistic kids contain high levels of this acid. Second this bacteria is responsible for increasing the level of inflammation in the body. And the WORST thing you can do for it is feed it probiotics. Well guess what?? On of the supplements I put my daughter on was a very high quality probiotic!! Right before she lost all her symptoms!

OK - following?

The CRAZIEST thing about all of this (and again why its getting so much attention) is that his protocol to reverse Autism is DEAD easy. You need to use daily Inulin (a prebiotic) - this kills off the bad bacteria (actually it doesn't directly but I am trying to keep it simple) and restores the natural gut flora. Once the bad bacteria dies off the propionic levels drop and the brain "awakens" this awakening allows the brain to return to typical functioning and catch up developmentally. You also use Omega 3 Fish oil to reduce the inflammation in the body/brain.

How does this relate to you?? (all of you??) because according to Dr. Nemechek this condition (SIBO) is behind almost all childhood disorders. ADHD, SPD, OCD, Anxiety, depression, etc. It is ALL resolvable via this protocol.

As I read through the literature I realized that in fact when I "cured" my daughter I was in fact following his protocol and just did not know!!! The naturopath told me to drop the inulin when we met! Then I was a dumbass and added in the probiotic and caused the entire situation to spiral into chaos.

I am telling you all this works!! And it works for an unbelievable number of issues! the belief is that 75% of the population have SIBO but that many might not have symptoms. But many "common issues" gluten/food intolerances, carpal tunnel, depression, tics, stuttering, dyslexia, aggression etc can all be resolved by this simple all natural protocol! He has recovered many kids (severe cases) and there are many people claiming it worked for them also! He makes no money off of this info and he will respond to every question people ask!


So now we are following the protocol to a T and finally starting to see the same results again!   It is cheap, has no prescription or bad side effects and works! 


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#2 katilac

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Posted 06 June 2017 - 06:14 PM

That is great for your daughter! Thanks for sharing. 

 

Can you clarify something? It sounds like you are using the inulin but dropped the probiotic, but I keep seeing probiotics mentioned everywhere as good for SIBO. Does Dr. N disagree with this, or did I misunderstand about quitting the probiotic? 


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#3 wapiti

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Posted 06 June 2017 - 06:26 PM

How fantastic that it helped your kiddo!

 

I think the Nemecheck protocol is intriguing but a little overly simplistic - or rather, a little overly one-size-fits-all.  For one thing, not everyone can tolerate fish oil (like my kiddo), and that seems to be a key piece of the protocol.  For another, I vaguely recall that there may be a need for prescription rifaximin, which would involve a doc willing to get on board.  Third, I've read conflicting things on inulin generally with regard to the microbiome, though anything is possible there.



#4 mermaid'smom

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Posted 06 June 2017 - 08:53 PM

That is great for your daughter! Thanks for sharing. 

 

Can you clarify something? It sounds like you are using the inulin but dropped the probiotic, but I keep seeing probiotics mentioned everywhere as good for SIBO. Does Dr. N disagree with this, or did I misunderstand about quitting the probiotic? 

Yes that is where he differs with the masses.  Ironically I was on the SIBO FB board for weeks and found it so disciuraging becuase literally NO ONE has a happy outcome story.  It is just person after person who keeps having relapses.  It is a group of frustrated people who are so discouraged.  Turns out that most of them are using heavy probiotics.  He says that people with SIBO she never in their lifetime tale probiotics. 



#5 mermaid'smom

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Posted 06 June 2017 - 08:59 PM

How fantastic that it helped your kiddo!

 

I think the Nemecheck protocol is intriguing but a little overly simplistic - or rather, a little overly one-size-fits-all.  For one thing, not everyone can tolerate fish oil (like my kiddo), and that seems to be a key piece of the protocol.  For another, I vaguely recall that there may be a need for prescription rifaximin, which would involve a doc willing to get on board.  Third, I've read conflicting things on inulin generally with regard to the microbiome, though anything is possible there.

The presciption is an option but it is not the "go to" way to handle it.  The protocol is very simple - which means whats the harm in trying?  In the end you either get the same amazing results or you are out $30.  Happy to answer any questions!


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#6 nature girl

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Posted 06 June 2017 - 09:32 PM

This is interesting, but many, many people are using Omega 3's trying to help ADHD, with minimal results. (We've been using pretty hefty doses for the past 2 years, just in case, but I don't really think it's helped at all.) Is the inulin actually necessary for his protocol?

 

I don't know, this seems like it must be too simplistic, or at least not true for all. Where does the hereditary nature of neuro-differences come in?


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#7 Moved On

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Posted 07 June 2017 - 12:11 AM

Personally, I have not followed the gluten and casein free diet or minimal supplements I have used with my kids, as a cure. The diets and supplements are usually recommended these days as a first line approach by some doctors to see if they can alleviate some of the effects of autism. With so many different genetic root causes for each individual, the diets and supplements don't always help everyone. I would never go as far as calling any a cure! On the flip side however, some kids have been hurt by fad therapies, so there's that to keep in mind as well.

I don't mean any offense to you. I am sure you are trying to do the best you can for your child, but with the symptoms you have described, I would be more focused on medical testing.

Edited by Canadian Mom of 2, 07 June 2017 - 02:39 AM.

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#8 geodob

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Posted 07 June 2017 - 09:23 AM

"Inulin is a starchy substance found in a wide variety of fruits, vegetables, and herbs, including wheat, onions, bananas, leeks, artichokes, and asparagus. The inulin that is used for medicine is most commonly obtained by soaking chicory roots in hot water."

"How does it work?

Inulin is not digested or absorbed in the stomach. It goes to the bowels where bacteria are able to use it to grow. It supports the growth of a special kind of bacteria that are associated with improving bowel function and general health. Inulin decreases the body's ability to make certain kinds of fats."
 
It just highlights the need to eat plenty of fruit and vegetables. 
Though to claim that it can reverse Autism?  As Inulin occurs in fruit and vegetables.  Then this is equal to claiming that eating lots of fruit and vegetables, will reverse Autism?
 
 

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#9 PeterPan

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Posted 07 June 2017 - 09:51 AM

It just highlights the need to eat plenty of fruit and vegetables. 

Though to claim that it can reverse Autism?  As Inulin occurs in fruit and vegetables.  Then this is equal to claiming that eating lots of fruit and vegetables, will reverse Autism?

 

 

Bingo. I've used a nutritionist for years who reverses candida, chemical sensitivities, etc. with only whole foods, including LOTS of fruit and veges. Most of your advice on candida is to go low carb (starve the beasts), and she's totally the opposite, giving people MORE fruit, LOTS of fruit. Totally counter-intuitive, and it works.

 

But even for all that, she doesn't claim to cure autism. Uh, hello, my kid has autism. Is just that he eats that way and is so overall good that people don't know what to make of him. He's this bizarre mixture of level 1, 2, and 3 behaviors. For a long time people were like ARE YOU SURE?? Hello, we're sure. 

 

So no, not curing autism, but a very good thing to do. Yes, eat your fruits and veges. And we're talking large amounts, like 4-6, even 8 or 9 cups a day sometimes. And for veges it's usually 4-6 cups of veges (starchy and low starch) a day. Most people don't eat anywhere CLOSE to that. 

 

I really doubt people are going to take enough capsules of inulin to get any serious effect. I don't know, haven't measured it out. I've seen it added to things. Sometimes when you process food, you lose the rest of what was making it good and it just logs in the body and causes more problems in the long run. Eating real food is safer.

 

And yes, reacting to fish oil is common. My ds did, even smelling like fish when he was young with just the slightest exposure. There's a name for it, I forget. It's why we use flax. 


Edited by OhElizabeth, 07 June 2017 - 09:56 AM.

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#10 shawthorne44

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Posted 07 June 2017 - 10:18 AM

My gut flora has been a problem for as long as I can remember.  My theory on the root cause is vigilant parents who took me to the doctor whenever I got sick during a time when doctor's always proscribed antibiotics.  Probiotics seem to work for a bit, then they don't.  They never seem to 'take' in my gut.  

 

I think I might try the Inulin and Omega combination.  With stuff like this, I look at the worse that could happen. I don't really see a worst.   I have been meaning to take Omega3 more often anyway, and a prebiotic sounds like a good addition.  


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#11 ktgrok

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Posted 07 June 2017 - 10:49 AM

Does the doc have a suggestion for people that get upset stomach from inulin?? It gives people in my family diarrhea when they have had it in granola bars and such. 



#12 PeterPan

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Posted 07 June 2017 - 02:15 PM

Does the doc have a suggestion for people that get upset stomach from inulin?? It gives people in my family diarrhea when they have had it in granola bars and such. 

 

What happens if they get it in a lower dose, more natural way like fruit? Sometimes people assume the diarrhea is bad, when really it's the body saying it wanted to kick out something. So feed them fruit for mid-morning and mid-afternoon snacks each day and see what happens.


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#13 mermaid'smom

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Posted 07 June 2017 - 09:33 PM

Promise I will answer every question but first - I forget...are we allowed to post links on this forum?  Like to blog posts etc?

 



#14 mermaid'smom

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Posted 07 June 2017 - 09:34 PM

This is interesting, but many, many people are using Omega 3's trying to help ADHD, with minimal results. (We've been using pretty hefty doses for the past 2 years, just in case, but I don't really think it's helped at all.) Is the inulin actually necessary for his protocol?

 

I don't know, this seems like it must be too simplistic, or at least not true for all. Where does the hereditary nature of neuro-differences come in?

The Inulin is the #1 needed item.  The inulin is what is required to restore the gut to its natural state.  Will explain better if I can link to something.



#15 mermaid'smom

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Posted 07 June 2017 - 09:37 PM

Here will provide the links and take down if it is a problem. 

 

Here is the blog post (by Dr. Nemechek)  that is garnering all the attention:  https://www.nemechek...ng-autism-2017/

There are over 700 blog comments and they are a MUST read to better understand.  People ask questions in there and he answers them ALL.  Also helpful to read the other blog post he has written (and provides links for in his article).

 

Oh and here is the Nemechek Protocol "for dummies" where everything is broken down in easier terms to digest: https://thenemechekp....wordpress.com/


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#16 mermaid'smom

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Posted 07 June 2017 - 09:46 PM

Personally, I have not followed the gluten and casein free diet or minimal supplements I have used with my kids, as a cure. The diets and supplements are usually recommended these days as a first line approach by some doctors to see if they can alleviate some of the effects of autism. With so many different genetic root causes for each individual, the diets and supplements don't always help everyone. I would never go as far as calling any a cure! On the flip side however, some kids have been hurt by fad therapies, so there's that to keep in mind as well.

I don't mean any offense to you. I am sure you are trying to do the best you can for your child, but with the symptoms you have described, I would be more focused on medical testing.

I was absolutely focused on medical testing!  I didn't actually intend to follow any "protocol"  I just wanted to change her diet to see if I could improve the constipation naturally and maybe reduce her fatigue.  And then BOOM she was this entirely different kid.  So for me it was a "cure" and apparently many others.  But no I don't want to go around giving false hope.  But if you read up on the info - and I have been researching this shit for years - this has been the most logical "science" I have come across yet.

 

Aside from that - it has given me my daughter back!



#17 mermaid'smom

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Posted 07 June 2017 - 09:55 PM

 

"Inulin is a starchy substance found in a wide variety of fruits, vegetables, and herbs, including wheat, onions, bananas, leeks, artichokes, and asparagus. The inulin that is used for medicine is most commonly obtained by soaking chicory roots in hot water."

"How does it work?

Inulin is not digested or absorbed in the stomach. It goes to the bowels where bacteria are able to use it to grow. It supports the growth of a special kind of bacteria that are associated with improving bowel function and general health. Inulin decreases the body's ability to make certain kinds of fats."
 
It just highlights the need to eat plenty of fruit and vegetables. 
Though to claim that it can reverse Autism?  As Inulin occurs in fruit and vegetables.  Then this is equal to claiming that eating lots of fruit and vegetables, will reverse Autism?

 

Well you are close - but worth noting that the amt of Inulin naturally occurring in foods is not sufficient.  Nor is it possible that you are consistently getting the same dose daily if you are eating a variety of foods.  Consistency is the key.

 

The Dr is not claiming that Inulin reverses Autism.  He does say that SIBO is the cause of Autism (round about) and that Inulin reverses SIBO.  The bacterial overgrowth associated with SIBO releases an exorbitant amount of Propionic acid. This acid has a "sedative" affect on the brain.  Once SIBO is under control the level pr Propionic acid decreases and the brain "wakes" up.

 

There are 100 billion neurons that the brain has to reduce down to 50 billion over the course of 18 years.  This is done as kids move through developmental stages and integrate skills etc.  When the brain is sedated by Propionic acid it halts this "pruning" and basically "freezes" children in certain developmental stages. Once the brain has been "awakened" it resumes this pruning and the "recovery" of this missed development continues.  Non verbal kids begin to speak etc.

 

It is SOOOOO FASCINATING and worth reading!



#18 mermaid'smom

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Posted 07 June 2017 - 09:56 PM

Bingo. I've used a nutritionist for years who reverses candida, chemical sensitivities, etc. with only whole foods, including LOTS of fruit and veges. Most of your advice on candida is to go low carb (starve the beasts), and she's totally the opposite, giving people MORE fruit, LOTS of fruit. Totally counter-intuitive, and it works.

 

But even for all that, she doesn't claim to cure autism. Uh, hello, my kid has autism. Is just that he eats that way and is so overall good that people don't know what to make of him. He's this bizarre mixture of level 1, 2, and 3 behaviors. For a long time people were like ARE YOU SURE?? Hello, we're sure. 

 

So no, not curing autism, but a very good thing to do. Yes, eat your fruits and veges. And we're talking large amounts, like 4-6, even 8 or 9 cups a day sometimes. And for veges it's usually 4-6 cups of veges (starchy and low starch) a day. Most people don't eat anywhere CLOSE to that. 

 

I really doubt people are going to take enough capsules of inulin to get any serious effect. I don't know, haven't measured it out. I've seen it added to things. Sometimes when you process food, you lose the rest of what was making it good and it just logs in the body and causes more problems in the long run. Eating real food is safer.

 

And yes, reacting to fish oil is common. My ds did, even smelling like fish when he was young with just the slightest exposure. There's a name for it, I forget. It's why we use flax. 

I'm telling you!  I came back here specifically to tell YOU about this protocol - super interesting!



#19 mermaid'smom

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Posted 07 June 2017 - 09:58 PM

My gut flora has been a problem for as long as I can remember.  My theory on the root cause is vigilant parents who took me to the doctor whenever I got sick during a time when doctor's always proscribed antibiotics.  Probiotics seem to work for a bit, then they don't.  They never seem to 'take' in my gut.  

 

I think I might try the Inulin and Omega combination.  With stuff like this, I look at the worse that could happen. I don't really see a worst.   I have been meaning to take Omega3 more often anyway, and a prebiotic sounds like a good addition.  

Awesome!  Honestly that is the reason I came here!  We are all spending $$$$$ on Vision therapy, therapetic listening, hours of OT, PT blah blah blah. 

 

This is cheap, easy and takes 2 minutes!  What do you have to lose? 

 

just do NOT take a probiotic!



#20 mermaid'smom

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Posted 07 June 2017 - 10:00 PM

Does the doc have a suggestion for people that get upset stomach from inulin?? It gives people in my family diarrhea when they have had it in granola bars and such. 

Yes - low and slow.  Go way below the recommended amt and slowly increase.  The alternative is an Antibiotic that is called Rifaximin.  It would also be used in a case like this.  I can give you more info on that if you want :)



#21 kitten18

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Posted 07 June 2017 - 11:07 PM

Here will provide the links and take down if it is a problem.

Here is the blog post (by Dr. Nemechek) that is garnering all the attention: https://www.nemechek...ng-autism-2017/
There are over 700 blog comments and they are a MUST read to better understand. People ask questions in there and he answers them ALL. Also helpful to read the other blog post he has written (and provides links for in his article).

Oh and here is the Nemechek Protocol "for dummies" where everything is broken down in easier terms to digest: https://thenemechekp....wordpress.com/

Thanks for sharing.

Links like that should be fine here.

#22 Moved On

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Posted 08 June 2017 - 12:47 AM

I was absolutely focused on medical testing!  I didn't actually intend to follow any "protocol"  I just wanted to change her diet to see if I could improve the constipation naturally and maybe reduce her fatigue.  And then BOOM she was this entirely different kid.  So for me it was a "cure" and apparently many others.  But no I don't want to go around giving false hope.  But if you read up on the info - and I have been researching this shit for years - this has been the most logical "science" I have come across yet.

 

Aside from that - it has given me my daughter back!

 

Mermaid'smom, I hope the improvements you are seeing remain consistent this time. I honestly do! I think I'll wait for official studies though, from my end. 


Edited by Canadian Mom of 2, 08 June 2017 - 12:48 AM.

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#23 ktgrok

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Posted 08 June 2017 - 07:28 AM

Yes - low and slow.  Go way below the recommended amt and slowly increase.  The alternative is an Antibiotic that is called Rifaximin.  It would also be used in a case like this.  I can give you more info on that if you want :)

 

Interesting. Like I said, when I accidentally bought some food with added inulin we all got diarrhea/gas/etc. So we'd been avoiding it. But...for other reasons I needed a protein bar/source that was dairy/soy free for a diet trial and they all had chicory/inulin in them. So I just gave it a try, and too gas x and beano. Started with a small amount, and then worked up to eating more of the products. Now I seem to tolerate them pretty well, with just some gas. But...the really interesting thing is that I was having depression and ADHD type issues at the end of my pregnancy and recently that is so much better, in the same time frame as eating the inulin products. Could be coincidence, but interesting. 
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#24 mermaid'smom

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Posted 08 June 2017 - 07:59 AM

Mermaid'smom, I hope the improvements you are seeing remain consistent this time. I honestly do! I think I'll wait for official studies though, from my end. 

Thank you!  And to each his own - but you will be waiting a LOOONNNGGGG time for official studies to come out as no one can make any real money off this.  No big Pharma company is going to investigae this - these are all items that can readily be found at your local walmart.

 

But - I don't have a "dog in the fight" as they say.  I don't benefit from anyone trying this.  Only your kids do.  It is 2 simple all natural ingredients that you can add to their day.  The olive oil is not the most critical part.  But I respect your position.



#25 mermaid'smom

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Posted 08 June 2017 - 08:02 AM

Interesting. Like I said, when I accidentally bought some food with added inulin we all got diarrhea/gas/etc. So we'd been avoiding it. But...for other reasons I needed a protein bar/source that was dairy/soy free for a diet trial and they all had chicory/inulin in them. So I just gave it a try, and too gas x and beano. Started with a small amount, and then worked up to eating more of the products. Now I seem to tolerate them pretty well, with just some gas. But...the really interesting thing is that I was having depression and ADHD type issues at the end of my pregnancy and recently that is so much better, in the same time frame as eating the inulin products. Could be coincidence, but interesting. 
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Then YOU sound like the perfect person to benefit from this!!



#26 mermaid'smom

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Posted 08 June 2017 - 08:14 AM

Oh!  And here is another CRAZY thing!  When I was on here last Summer it was out of sheer desperation as my daughter had started having some mobility issues.  Those of you who were around will remember.  We were seeinga Neurologist and there was some MRI discussion on here that became heated.

 

In regards to her mobility - she was losing the ability to manipulate stairs easily, she stopped wearing her mermaid tail as she could not get her legs to move the same etc.  We also uncovered the fact that she could NOT cross her midline.  She was literally unable to move her tongue from left to right. (I have video of this).  It was very difficult.

 

We started B12 (as a result of some blood work) and that REALLY helped with the mobility -she seemed to gain it all back.  But the midline stuff was still awful.

 

We did therapy EVERY day all Summer and just worked on crossing the midline. It was long arduos work and I won't lie didn't REALLY make a difference.  She found it frustrating and difficult and I found it painful to watch and frustrating as we never seemed to build on it.  Every session was the same success.  I filmed everyone of these sessions and I am happy to show you an example.

 

Anyway the therapist said - lets give it a rest.  She said your daughter is getting depressed and all this is doing is emphasizing what she CAN'T do.  Lets switch up therapy for a while and start making sure she is being successful again and we can revist this later.  So we dropped it.

 

So back in April when she was flippin "cured" from GF/DF (or so I thought) I was shocked when one day she was outside RUNNING around like a monkey and she said to some neighborhood 6-7 year olds.  How do you do a cartwheel?  I looked at my husband like "dear lord!!".  The little ones tried to "teach" her but they gave confusing instructions.  I suggested she just watch and see where there feet land etc.

 

So she did and then NERVOUSLY got into position and VOILA a damn CARTWHEEL happened.  And over and over again!!  She could calculate how to organize her body somehow!!

 

So I whip out my phone and remember those tongue/midline exercises say (while taping) I want to you swipe your tongue etc etc.  And she could do it!!!  It was crazy!!

 

At the time I was like HOW IS GLUTEN SO DAMAGING???  But now I know it is the inulin keeping the SIBO under control!  I can post these videos. 



#27 geodob

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Posted 08 June 2017 - 09:05 AM

I just read this page about probiotics on the Nemechek website?

Where clearly he doesn't know what he is talking about.

It wouldn't be so bad, if his Protocol didn't do any harm.

But in fact, it could have a broad range of damaging effects.

 


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#28 mermaid'smom

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Posted 08 June 2017 - 09:07 AM

I just read this page about probiotics on the Nemechek website?

Where clearly he doesn't know what he is talking about.

It wouldn't be so bad, if his Protocol didn't do any harm.

But in fact, it could have a broad range of damaging effects.

I am genuinely SHOCKED that you came to that conclusion.

 

Specifically what?  I am really curious how you think having Inulin and Omega 3 is damaging?

 

And worth noting that the success stories just keep pouring in.


Edited by mermaid'smom, 08 June 2017 - 09:08 AM.


#29 geodob

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Posted 08 June 2017 - 09:35 AM

It is not Inulin or Omega3 does the damage, as are essential.

What is of concern, is his mis-understanding of probiotics and 'intestinal flora'.

Where a wide range of different types, are required to process nutrients and enable them to be absorbed.

 

When this 'wide range' isn't maintained, it will result in various deficiencies.

This could also allow a flora called 'Clostridia' to become dominant. Which will result in increased levels of Propionic acid.

 

Inulin doesn't destroy any flora?

It just helps with growth of all intestinal flora.

 

 



#30 wapiti

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Posted 08 June 2017 - 09:40 AM

I don't know about damaging per se, but there are situations where fish oil is going to be a negative.  Fish oil is known to increase tics in some people.  For my guy, it increases ocd, and I may have figured out why, though I'm not entirely sure.  Likely it depends on the person, but fish oil may push the immune system in the wrong direction - it may move the Th1/Th2 balance more toward Th2 (which is common in situations of suspected autoimmunity).  I can't remember if it increases Th2 cytokines or decreases Th1 cytokines, but ultimately, for the wrong people, it's sort of trading one type of inflammation for another.  In my kid's case, he already has elevated Th2 cytokines.

 

Whether inulin helps or hurts SIBO is controversial, at the very least, and accordingly I suspect that too depends on the person.

 

We have had mixed results with probiotics in our house - my child most likely to have SIBO asks for them (this child is scheduled for a scope very soon though I'm not sure we will go through with it); my other kiddo, the one for whom fish oil is bad, does not do well with probiotics either, but he has a seriously messed up gut.  (I probably have a dozen different types of probiotics in the house right now.)

 

The difficulty I find with any protocol where it takes a long time period of supplementation to see results is that, just like potential positives, potential negatives may take time to see as the effects build slowly.

 

Where Nemechek is correct is noticing the connection between the gut (the immune system) and nervous system symptoms, though that ought to be common knowledge these days.  But, there is no one-size-fits-all solution.



#31 mermaid'smom

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Posted 08 June 2017 - 09:49 AM

It is not Inulin or Omega3 does the damage, as are essential.

What is of concern, is his mis-understanding of probiotics and 'intestinal flora'.

Where a wide range of different types, are required to process nutrients and enable them to be absorbed.

 

When this 'wide range' isn't maintained, it will result in various deficiencies.

This could also allow a flora called 'Clostridia' to become dominant. Which will result in increased levels of Propionic acid.

 

Inulin doesn't destroy any flora?

It just helps with growth of all intestinal flora.

Well then we actually agree.  As does Dr. N.   He would say that SIBO is a case where one "neccesary, vital - serves its purpose" bacteria has overgrown its location (the colon) and that the "neccesary, vital - serves its purpose" bacteria that is meant to live there and do its job is being impacted negatively by this overgrowth.

 

Further he would say that a Probiotic (in this case) would feed them both (thereby keeping the ratios the same and in favor of the colon bacteria) and antibiotics would deplete them equally (also unaffecting the ratios and therfore mainting a depletion of bacteria that is still in favor of the colon bacteria).

 

But that Inulin FEEDS the sm intensine bacteria.  the prescence of Inulin does not benefit the colon bacteria and therby you are only nurturing and nourishing the bacteria that is meant to live there.  As they increase in number and push back the colon bacteria you restore the gut to its "natural" flora which does include the presence of many strains.  They all benefit from the reduction in the colonic bacteria.  They all find food sources again and the gut is much healthier as a result.

 

But aside from this - he is by FAR not the only person making these claims.  You do realize that or no?  Even my naturopath advised against her taking probiotics.  Of all the things he has claimed - avoiding probiotics is by far not the most controversial.



#32 Moved On

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Posted 08 June 2017 - 09:50 AM

This:

Whether inulin helps or hurts SIBO is controversial, at the very least, and accordingly I suspect that too depends on the person.

...

The difficulty I find with any protocol where it takes a long time period of supplementation to see results is that, just like potential positives, potential negatives may take time to see as the effects build slowly.

Where Nemechek is correct is noticing the connection between the gut (the immune system) and nervous system symptoms, though that ought to be common knowledge these days. But, there is no one-size-fits-all solution.



#33 mermaid'smom

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Posted 08 June 2017 - 09:51 AM

I don't know about damaging per se, but there are situations where fish oil is going to be a negative.  Fish oil is known to increase tics in some people.  For my guy, it increases ocd, and I may have figured out why, though I'm not entirely sure.  Likely it depends on the person, but fish oil may push the immune system in the wrong direction - it may move the Th1/Th2 balance more toward Th2 (which is common in situations of suspected autoimmunity).  I can't remember if it increases Th2 cytokines or decreases Th1 cytokines, but ultimately, for the wrong people, it's sort of trading one type of inflammation for another.  In my kid's case, he already has elevated Th2 cytokines.

 

Whether inulin helps or hurts SIBO is controversial, at the very least, and accordingly I suspect that too depends on the person.

 

We have had mixed results with probiotics in our house - my child most likely to have SIBO asks for them (this child is scheduled for a scope very soon though I'm not sure we will go through with it); my other kiddo, the one for whom fish oil is bad, does not do well with probiotics either, but he has a seriously messed up gut.  (I probably have a dozen different types of probiotics in the house right now.)

 

The difficulty I find with any protocol where it takes a long time period of supplementation to see results is that, just like potential positives, potential negatives may take time to see as the effects build slowly.

 

Where Nemechek is correct is noticing the connection between the gut (the immune system) and nervous system symptoms, though that ought to be common knowledge these days.  But, there is no one-size-fits-all solution.

It is super interesting that you notice that about the fish oil.  And yes Dr. N would agree with you that some struggle with the Omega.  In that case he says start only with the Inulin.  Let that do its work for a while and in most cases the fish oil is now tolerable.  Many are doing exactly that - using the Inulin to lay the groundwork for the Fish oil to be tolerated. 



#34 mermaid'smom

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Posted 08 June 2017 - 09:55 AM

This:
 

Well the beauty of this is that it is not a LONG period of time to see results.  Most people see them pretty quickly.  If there is no progress he has some recomendations but most people see signs of improvement (subtle as they are) fairly early.  Of course there can also be some constipation and digestive issues - which is to be expected when you consider you are drastically altering the guts biodiversity.  But most feel any negatives have been overshadowed by the gains in speech etc.

 

Anyway - i shared my story.  We are thrilled.  Some of you might want to look into it! :)



#35 Moved On

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Posted 08 June 2017 - 10:05 AM

Probiotics have been useful in our home, especially for me and my 8 yr old. I do not attribute the language gains he has made to just one thing.

Moderation and primarily from healthy organic food sources. That's what I follow!


Edited by Moved On, 13 August 2017 - 12:49 AM.


#36 wapiti

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Posted 08 June 2017 - 10:11 AM

It is super interesting that you notice that about the fish oil.  And yes Dr. N would agree with you that some struggle with the Omega.  In that case he says start only with the Inulin.  Let that do its work for a while and in most cases the fish oil is now tolerable.  Many are doing exactly that - using the Inulin to lay the groundwork for the Fish oil to be tolerated. 

 

I don't really see this as a matter of tolerability as much as a wrong idea for certain situations, as in, the immune system effects are backwards from what is needed.

 

FWIW, it's not just what I've noticed.  We aren't dealing with tics (as far as I can tell and thank goodness) but tics are a big deal in PANS world and it is actually well known that fish oil can increase them as well as other PANS symptoms, for some people.  And yet, not well-known enough because I commonly come across people in PANS world who are not aware of the possibility.

 

ETA, what I'm trying to say is that this is way, way, way more complicated, on a molecular level, than any one-size-fits-all protocol.


Edited by wapiti, 08 June 2017 - 10:14 AM.


#37 nature girl

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Posted 08 June 2017 - 01:12 PM

Sorry, I put this in the wrong thread. C&P'ing here...

 

I have the feeling that it's one of those things where gut health is the main issue for some (and it makes me giddy that it worked so well for you!!), but probably not most. I know some kids are almost completely "cured" when food dyes, pesticides, gluten, casein, whatever are removed, some kids improve on extreme FOODMAP or GAPS or Feingold diets, but the majority just do not, despite the claims of the doctors selling them. In my mind, it's worth trying if you've noticed other body issues not related to the neurological issues, like allergies/eczema, digestive issues, frequent illness, fatigue, etc. But in most cases there are actual permanent brain differences at play due to their genes, and changing diet probably won't do much if anything to alter those.

 

I may just be jaded because we tried EVERYTHING before resorting to meds, DD was gluten and casein and dye and pesticide-free for 2 years, we supplemented out the wazoo, it all was extremely expensive, and did pretty much nothing. But I really have a hard time believing that the majority of these kids with structural brain differences, most of which are hereditary, can be cured through manipulating gut flora.


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#38 Moved On

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Posted 08 June 2017 - 01:19 PM

No one tries one thing with kids on the spectrum or ADHD and boom problem solved! We all try different combinations of things and each child is so different it's impossible to know if it was one thing that helped. I think progress is cumulative and based on several things that just seem to work better together for each child. This is why I agree with Barry Prizant that approaches and strategies have to be specific to each child!

Edited by Canadian Mom of 2, 08 June 2017 - 02:35 PM.

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#39 mermaid'smom

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Posted 08 June 2017 - 02:38 PM

I actually agree with both of you.  I personally don't think this a magic cure for everyone.  For my daughter - yes so far... 

 

I certainly did not come here with the intention of spouting off that I found a magic cure or sounding like an info-mercial.

 

But like you said - there is the real possibility that the GUT can cure these issues for some and this man MAY have found the magical combination (of Inulin and Omega) that expedites this healing.

 

Like all of you I came here looking for ways to HELP my daughter.  There are literally ONE MILLION options.  Thousands of testimonies that XYZ worked so well etc.  And you know what?  They are hard to wade through.  Many are expensive and time consuming, daunting etc. 

 

And many times I had to walk away from a "good thing" because it was too expensive - Vision therapy was $6000 for my daughter.  Didn't happen.  Occupation Therapy cost us a fortune.  There have been things I could just not afford to "try" regardless of the successful testimonies.

 

This worked for me.  This is working for MANY.  It is all natural, take 2 minutes a day and at worst you will be out $30.  There hasn't been one therapy yet that I have come across for this money that has produced these results.

 

But....like I said to each their own. Some of you have your minds made up and I respect that.  I find it funny that there was a healthy dose of people on this board that tried to BULLY me into getting an MRI but that the suggestion of Inulin and Omega 3 is considered controversial and damaging??  :confused1:

 

But I appreciate that you listened and that you are happy for us.  Thanks!


Edited by mermaid'smom, 09 June 2017 - 01:40 PM.

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#40 Moved On

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Posted 08 June 2017 - 03:02 PM

I find it funny that there was a healthy dose of people on this board that tried to BULLY me into getting an MRI but that the suggestion of Inulin and Omega 3 is considered controversial and damaging?? :confused1:


I remember that and was on your side at the time. However, MRIs are not invasive or carry potential risks. My approach, I weigh risk to benefit. If the risk is too high or not clear (as in this case) or if the benefit is not significant or is not clear, then I don't proceed. Something has to make sense to me and be backed by proof from various credible sources.


Edited by Moved On, 13 August 2017 - 12:52 AM.


#41 mermaid'smom

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Posted 08 June 2017 - 03:44 PM

Yes you were and it was appreciated then and now. I will never forget or lose appreciation for the way that you stood up for me. Thank you again for that.


Edited by mermaid'smom, 08 June 2017 - 04:32 PM.

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#42 Moved On

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Posted 08 June 2017 - 03:58 PM

You and your girl will be in my thoughts and prayers :grouphug:
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#43 Pen

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Posted 08 June 2017 - 04:18 PM

Thank you for sharing what you found helped your dd. I've seen diet and supplements do amazing things and plan to look into what you posted further.


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#44 Moved On

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Posted 08 June 2017 - 07:30 PM

Cross post:
Stumbled across this and thought I would add it here and in the other thread. Some may find it interesting.
https://www.autismsp...itive-behaviors
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#45 OneStepAtATime

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Posted 09 June 2017 - 11:06 AM

Hey, OP, I am so glad that you have found something that seems to be working.  I hope with all my heart this really solves the issues because you and your poor kiddo have been through so much.  You both deserve answers and a healthier path.   :hurray:  :hurray:  :hurray:

 

I am also glad that you shared.   Thank you.

 

I think some may be resistant to your statements because it really did come off as more this is a cure all and will work with everyone even though you stated that was not your intention.  Having been down that road it can get really depressing to try yet another thing that is supposed to be THE answer only to find that it isn't.  It also makes a lot of us quite jaded.  Please don't take it personally.  There are just a lot of us who have heard it all before only to find the fix didn't work or was only temporary or masked what was actually happening.  

 

On the flip side of that coin, it is ABSOLUTELY CRITICAL, IMHO, for us to share what is working and what isn't  because the VAST majority of the things that ended up working for my kids came from suggestions of other parents going through their own journeys, NOT professionals.  Most of the time the professionals were the opposite of helpful to me and my kids.  Some things that professionals poo pooed and were very dismissive of actually turned out to be EXACTLY the problem we were seeing or was the solution we needed.  Without other parents willing to share their journey I would not have had access to the information to even know what questions to ask, much less what avenues to pursue.  

 

Again, thanks for sharing.  I deeply appreciate it.  I will be pondering this thread and studying what you have posted.  Hugs and best wishes. 


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#46 nature girl

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Posted 09 June 2017 - 11:23 AM

Yes, I was going to come back and say almost exactly what One Step did. I hope you know my cynicism wasn't against you, although I'm sure it must have come out that way. I wrote my post after reading his page, and he seems to claim that this is a cure-all for a majority of people with numerous neurological issues. I've seen that with Feingold, and other so-called cures sold to desperate parents, so claims like that raise the hair on the back of my neck, even knowing some have found them helpful. And then I read elsewhere that too much inulin can actually be dangerous, and got upset with this doctor for almost implying this should be a first-line choice, before other meds.

 

That's why I said there are probably only a subset of people who should try this, with kids who show other evidence of gut issues. I didn't mean it to come off as critical of you in any way. I'm truly so happy for you and your daughter, and I'm so glad you came back to share your success.


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#47 mermaid'smom

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Posted 09 June 2017 - 01:32 PM

Hey, OP, I am so glad that you have found something that seems to be working.  I hope with all my heart this really solves the issues because you and your poor kiddo have been through so much.  You both deserve answers and a healthier path.   :hurray:  :hurray:  :hurray:

 

I am also glad that you shared.   Thank you.

 

I think some may be resistant to your statements because it really did come off as more this is a cure all and will work with everyone even though you stated that was not your intention.  Having been down that road it can get really depressing to try yet another thing that is supposed to be THE answer only to find that it isn't.  It also makes a lot of us quite jaded.  Please don't take it personally.  There are just a lot of us who have heard it all before only to find the fix didn't work or was only temporary or masked what was actually happening.  

 

On the flip side of that coin, it is ABSOLUTELY CRITICAL, IMHO, for us to share what is working and what isn't  because the VAST majority of the things that ended up working for my kids came from suggestions of other parents going through their own journeys, NOT professionals.  Most of the time the professionals were the opposite of helpful to me and my kids.  Some things that professionals poo pooed and were very dismissive of actually turned out to be EXACTLY the problem we were seeing or was the solution we needed.  Without other parents willing to share their journey I would not have had access to the information to even know what questions to ask, much less what avenues to pursue.  

 

Again, thanks for sharing.  I deeply appreciate it.  I will be pondering this thread and studying what you have posted.  Hugs and best wishes. 

Thanks!!  I totally get it.  I have had my heart broken a million times when promising things just didn't amount to much for us.  That is why I love that ANYONE can afford to try this.  Like we all know - it may not be YOUR solution but there aren't many blockade to giving it a whirl like so many other "treatments" out there!

 

I hope some people on here benefit from this protocol like we are!

 

And thanks for coming back to leave your comments :) 


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#48 mermaid'smom

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Posted 09 June 2017 - 01:36 PM

Yes, I was going to come back and say almost exactly what One Step did. I hope you know my cynicism wasn't against you, although I'm sure it must have come out that way. I wrote my post after reading his page, and he seems to claim that this is a cure-all for a majority of people with numerous neurological issues. I've seen that with Feingold, and other so-called cures sold to desperate parents, so claims like that raise the hair on the back of my neck, even knowing some have found them helpful. And then I read elsewhere that too much inulin can actually be dangerous, and got upset with this doctor for almost implying this should be a first-line choice, before other meds.

 

That's why I said there are probably only a subset of people who should try this, with kids who show other evidence of gut issues. I didn't mean it to come off as critical of you in any way. I'm truly so happy for you and your daughter, and I'm so glad you came back to share your success.

What I love about him (though I cannot speak for Feingold etc) is that he is not trying to sell ANYTHING!  There is not really any money to be made from this.  He is literally giving of his knowledge and his time (answering hundreds of questions via his blog and emails) for FREE!  He just wants to empower people about their health.

 

There is mixed info on line about EVERYTHING.  I believe in this mainly because of the gains we are seeing. 



#49 mermaid'smom

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Posted 09 June 2017 - 01:38 PM

Just adding that if anyone here decides to try this - please come back and update or send me a message.

 

Keep in mind the beginnning can get rocky - increases in stimming, anxiety etc (maybe some digestive upset) but if you can just get through it and not panic that your child is regressing you will be amazed.  Those are all signs that it is working so just dig deep and stay the course :)

 


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#50 Moved On

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Posted 09 June 2017 - 02:36 PM

Mermaid'smom, one book I have personally found useful is Dr. Kenneth Bock's book *Healing the New Childhood Epidemics*. It is a book I read early on in our journey and is a book I refer back to. Anyway, I'm linking this from Google books. I hope this works as it is a book I have as a printed copy and I am not sitting at the computer to type the quote. You will see here that while he recommends probiotics as a supplement, when it comes to inulin, he suggests food sources. Dr. Bock's book taught me how to be balanced with how I approach supplements, which is why it is a book I refer back to.

https://books.google...=inulin&f=false

Also, I'm not sure if you are saying about the stims for those that have kids on the spectrum and not specifically about your daughter but if your daughter stims you could look into having her evaluated for autism. I am *not* saying your daughter is on the spectrum but if the possibility is there, from your observations, know that some changes were announced yesterday that may at least get you some funding for services:
http://www.cbc.ca/be...tario-1.4151078

Just thought I would let you know and you can also pass the info along to people you know that may not have heard about it, yet. I remember you had said you had some acquaintances with kids on the spectrum.
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