Nemechek protocol

[Syeda30]

Hi

Just wanted to hear from parents who tried nemechek protocol with their kids. I saw a couple of mums who were willing to try the protocol. Any updates?

Bumping, wondering if anyone had a go as I see it mentioned on a FB group in relation to something else, but also saw its linked to autism and started doing a bit more research about it.

Even i read about it and wanted to give it a go

My issue with it is that it seems like snake oil... If it really worked, there would be peer reviews right? If there was a magic cure, everyone would have known about it.
I also read about children who deteriorated, so I am not sure if I wanna try. I wanna believe something out there can help, but dont want to pin my hopes on something than can make things worse if that makes sense?
My DD has tremendous reflux when born and loads of people recommended us osteopath, which was the biggest waste of money EVER, but I had read so much beforehand how amazing it is and hoe oyu have a new baby overnight and it never happened for us... :( I was thinking maybe doing a not complete protocol with one ingredient and see what happens instead of throwing a lot of money on expensive supplements that may do nothing.

The success stories by so many parents are hard to ignore. Might work for some and not for others. Please keep posted if you go ahead. Thanks!

I know, but also I am so afraid we will be one of the few who experience nothing or increased aggression, in which case I'd rather stay where we are, we're going through so much grief already...
Have you started yoursef? Which supplements were you looking into?

Oh, I remember this one - inulin and fish oil. Yep, been there, done that, got the t-shirt ... Probably not strictly to the rules but these "snake oil" and "copper bracelet" treatments for autism really annoy me. If any of them could genuinely treat autism then the mainstream medical establishment would be promoting them, there would be research, peer-reviewed papers, etc.

I already cook his food in olive oil and give him fish oil just had to add inulin. I have started him 3 weeks ago!

Hi Eggysmom
Did it help you at all?

Did it help you at all? Nope. I'm not saying that Nemecheck doesn't work, do any of the 'snake oil' therapies work? Do your homework, and remember that people are only likely to tell others if it does work - a bit like how Tripadvisor is always full of bad reviews, therapy reviews are always evangelistic.

@Syeda30 how do you give inulin? It's a capsule or powder I think, do you mix it in with something?
The only thing I'm afraid of is that it will make things worse. I have read the protocol can start night terrors and constipation, especially if children are sensitive to histamine, if the result would be nothing even I'd not hesitate. Let us know how you get on!

Can i pm you?

Of course @Syeda30!

We tried it and at first my DS seemed more focused and clear but after a week or so and we had increased aggression and major hyperactivity. Stopped and tried again after quite a few weeks but no results. Still cook healthy and try to get as much vitamins as possible in the little guy 👍🏼

Autistic DS, DH and myself have been doing the protocol since November last year. We were also concerned with aggression/anxiety, so we started the protocol by eliminating most vegetable oils from our diets, and adding the the olive oil component of the protocol only. We did that for several weeks, and noticed quite significant change in my son's eye contact. He was more engaged. I was amazed because I wasn't expecting anything without the inulin (as per the book). We then added the fish oil and did the oils only, for at least 6 weeks. We then micro-dosed the inulin (started at 1/32nd of a teaspoon, even though the book says to start at 1/8th. The Facebook group said it was fine to start very low, if you're worried about possible 'side effects'.) Even now 7 months later we're only on 1/16th of inulin powder once a day. We'll stay there until we plateau. The most noticeable difference for all three of us is improved gut function, and reduced anxiety. My son no longer has a constantly bloated tummy, which is wonderful. His poo is properly formed (TMI!) which was never the case, since infancy. The connection between poor gut health and autism is mainstream now (our paed says two of his colleagues are currently completing their PhDs on exactly this topic).

As for there being no peer reviewed science, that may be true for the Nemechek protocol as a whole (which he discusses in his very accessible book), but there absolutely are studies which suggest prebiotics (like inulin) have a positive impact on autistic kids - and not just on their gut health, but on social behaviours. Obviously there's lots more work to be done, as this is a relatively new field of research. It took me two seconds the find this one... www.ncbi.nlm.nih.gov/pubmed/30071894

By the way, you really do need to stick to the rules to see positive results. Otherwise you're not doing the protocol. His book is very clear on this, as are the people having positive results, and I would count my family among them.

Skeptile
Hi! I started by boy two months ago with 1/8 inulin he has been quite handful since then. But i am manging his behaivours some how. It was disheartening as i could not see any gains. But more eye contact came this week and he is behaving different in posituve way. I am happy. Thinking of stopping inulin for a while to see if that helps with hyperactivity.
Is your son verbal. Mine doesnot say even a word. He is 2.5 and non diagnosis. Ppl say it also helped with speech. Did it help him as well?

Hi Syeda my boy is verbal, no change in his speech and language on the protocol. Because he started school this year (Australia) I'm reluctant to ascribe too much to the protocol because gains could just as easily be caused by being in a new and positive educational setting. However, the improvement in his gut health is amazing. Why don't you halve the dose of inulin and let it settle for a few weeks? I had a strong instinct that 1/8 was going to be too strong for DS, and even 1/32 caused reactions in all three of us! But completely manageable. Two months is no time at all. The book says speech is often last to come, in terms of gains. Best wishes!

The success stories by so many parents are hard to ignore
All children change as they get older, and they aren't going to tell you if their child didn't change, are they?

Sorry for the crappy source, not specifically about Nemechek, but probioticks in general.
The study was tiny, and helped some and not others, so inconlusive, but I suppose for people it did help it's been great, so may be worth giving it a go.

We are on NP to great effect, but it is not a quick fix by any means. Recovery is low and slow, with lots of relapses, re-balancing and healing the gut, feeding the brain, reducing inflammation. Getting doses right is a fine art, takes time, and I expect many people get this wrong and give up or lose patience. Book needs to be read and re-read very carefully. It's nothing like snake oil or copper bracelets, there is so much independent research about the gut and the differences in the microbiota of autistics, and health benefits of pre-biotics and the oils.

I tried the Nemechek protocol with my son in 2020. I would not say that it worked or didn't.

Reason is simply because the boy would not continue with it. The fish oil was just too disgusting for him. I understood when he refused to take it. He actually did puke after a few sips.

But I liked the fact that Dr. Nemechek did point out on reducing wheat and dairy from his diet. In fact these were causing bloating and trouble pooping.

I did write this experience on my blog here