The journey we’ve been on with Rory since figuring out a few months ago that she officially has apraxia has been such a learning experience including driving through a tropical storm to get a diagnosis and successfully navigating the Medicaid application process to get her CMS insurance to cover the extensive therapy she needs.
Throughout these few months I have read a lot of books that have opened my eyes to apraxia, sensory processing disorder, behavior modification, and the latest, the Nemechek Protocol. Neme-what, you might be thinking? This was certainly new to me, too.
I really do believe that there are “signs” put out there from the universe that we really need to see, so I tend to fall down rabbit holes quite frequently in the various Facebook groups I’m a part of, exploring various disorders, treatments, and especially success stories to see if they might be that one magic bullet Rory really needs me to find. Some have nothing to do with her, others are discredited with some research, but this one? I just couldn’t ignore it.
Someone in my Gemiini Facebook group posted about the amazing results their child had been having using the Nemechek Protocol along with a link to The Nemechek Autism and Developmental Disorder Support Group on Facebook. I was intrigued because a big part of the protocol is using fish oils, which we’d learned about in our CHERAB group Lisa Geng and had been trying for the part few months with some results (increased babbling and sound production) but not the huge gains we’d been hoping for. Nemechek has some slight, but in my opinion important, differences and additions, namely the addition of inulin fiber to repair gut imbalance and the reduction of omega-6 oils that cause inflammation.
I joined the Facebook group and immediately posted to find out if any of the other parents had success with apraxia. Here’s what I asked:
My daughter is three and has severe apraxia (not related to autism). We currently have her on an EFA/EPA fish oil protocol that includes Nordic Naturals EFA 3-6-9 with additional EPA (this is recommended by the CHERAB group and has been successful with thousands of kids with apraxia). I saw that Nemechek says to avoid the Omega 6 oil because it causes inflammation but I am hesitant to mess with this proven apraxia protocol. We already cook with EVOO, and I am going to start her on the Fiber Choice gummies in addition to the fish oil dosage she is already on to give Nemechek a try. Do you think I will see some results, or will the small amount of Omega 6 she is currently on invalidate the effects of the inulin?
I had several responses telling me that yes, I really did need to ditch the omega-6, and then this one, which just touched my heart so much it made me decide that this was worth trying:
My daughter had an apraxia diagnosis as well. She had 12 words at 2 1/2 years. She is now about to turn 4 this month and our new speech therapist is surprised that she had an official diagnosis. We started a complete Barleans oil and saw big improvements but nothing compared to the Nemechek protocol. She is so much more aware and “normal” for lack of better wording. SLP is able to understand 60-70% of her language. I highly recommend giving it a try. She had been talking so much more, and asking why, how, so much more developmentally appropriate. And she’s so much more aware, less in a fog. She’s also been playing pretend. She was talking before we started protocol. The fish oil is what really helped her start talking. But when we started the protocol, she just blossomed. It’s hard to describe. She’s more conversational and developing more normally. I didn’t know what her future would hold before, and now I see her having a normal life.
Does that give you chills, or what?!
I will do my best to explain Nemechek in my own words and attempt not to butcher too much of the science, starting off by saying that while this has gotten a lot of results with autistic kids, I believe that nearly everyone can benefit from it, including kids with other developmental and neurological challenges, adults with a whole slew of health issues, and really, anyone who eats a modern diet. Because that’s where it starts: with diet. Back in the old days humans ate much healthier diets full of omega-3 (fish oils) and omega-9 acids (olive oils). When processed foods became more common, omega-6 acids (soy and vegetable oils) became much more prevalent, so the balance got thrown off drastically. Omega-6 oils cause inflammation, and inflammation causes that whole slew of issues within the body. The Nemechek Protocol increases the omega-3 and omega-9 intake and reduces the omega-6 intake to put the body back into balance again.
The other issue that the Nemechek Protocol addresses is the gut biome, specifically SIBO, or small intestine bacterial overgrowth. The way Dr. Nemechek explains it, you have a specific type of bacteria in your small intestine (he calls them birds) and a specific kind in your colon (fish), and when the fish start to go crazy, they come up and mix with the birds, which can also cause so many issues within the body, one of which is production of propionic acid, which can act as a sedative or a drug to the brain, slowing or even halting brain development. When a baby is born, there are 100 billion neurons in the body that have to be reduced to 50 billion between birth and age 18. This is what is supposed to happen, but when the brain is affected by propionic acid, the “pruning” is halted and developmental delays can become evident. Once the levels of propionic acid drop due to the healing in the gut, the brain “awakens” (which can actually cause some bad behavior when it starts) and pruning resumes, so many kiddos are seeing gains in speech, socialization, and more. There is also lipopolysaccharide (LPS) produced which is fragments of bacteria cell membrane that leak into the blood stream (leaky gut) and flow to the brain where the LPS alters the function of the special white blood cell known as microglia.
Another reason this protocol caught my attention is how it relates to the brain’s ability to heal itself from injuries, since Rory fell backward and hit her head on concrete at the splash park when she was 11 months old. While she was given a clean bill of health at the hospital after a scary ambulance ride, it has ALWAYS haunted me and made me wonder if that was what caused her delays. Every therapist and doctor has always told me no, but now I am wondering if that gut feeling of mine might have merit. While Dr. Nemechek doesn’t have an analogy for this part, I made my own. The brain has these microglia that are in charge of the brain, I call them Minions. When a small brain injury happens, like pretty much all children get a million of from bumps and falls, they turn into Happy Minions and go about repairing the injury. However, with the propionic acid and/or LPS and inflammation, they not only DON’T turn into the Happy Minions, but they become “primed” microglia, that are like those Purple Minions, and they refuse to repair issues and can actually make them worse. So in Rory’s case, the head injury that would normally have been repaired no problem could have just been sitting there unhealed for the past two years.
The good news is that these issues and more can ALL be reversed by the Nemechek Protocol, and it’s both simple and affordable. And importantly as well, it doesn’t cause the body potential harm or side effects; it’s actually healthy and good for everyone whether it has the hoped-for results or not. That’s why I feel so strongly about writing this post and letting people know it exists…even if it’s not Rory’s magic bullet, maybe it’s yours?
So how does it work?
Step 1: Inulin Fiber…in either gummy form (we are using Fiber Choice Fruity Bites from Amazon, which are super yummy and affordable) or powder form (NOW Inulin Prebiotic Powder from Amazon) which you can mix into liquid, applesauce, etc. The Getting Started document from the Facebook group talks more about the dosage, so I won’t get into the specifics. Rory is taking two of the gummies and Glenn, the boys and I are each having one, because while most of us aren’t showing any of the issues Nemechek treats, I’m willing to bet we are all suffering a bit from gut imbalance from our diets. I’m planning to start Owen on a tiny bit of the powder when it gets here from Amazon.
Step 2: Omega-3s/Fish Oil…again in either gummy form (we aren’t using these), liquid, or capsules, or our personal delivery method for Rory, poking a hole in the capsule and squeezing the liquid onto a spoon. There is suggested dosage depending on age…for 1-5 years old it’s 450-600 mg of combined EPA and DHA, with more DHA being better since it’s the only one that really penetrates the brain.
Here are some of the fish oils we’ve had luck with (I feel like a wine collector, but with fish oil!):
NOW DHA 500 comes with the highest recommendation from Dr. Nemechek. Glenn and I swallow these but if you’re going to squeeze the liquid out it is full-on fish oil and smells and tastes like it so beware. I couldn’t handle squeezing these from Rory but a lot of people swear by them.
Nordic Naturals DHA is small and strawberry flavored. Carter can swallow these, so that’s what he gets. Some people have trouble with the natural strawberry flavor but we haven’t.
Nordic Naturals DHA Xtra is a bigger version of the above. I poked and squeezed these for Rory and while it still does taste fishy, it also has the strawberry flavor so it doesn’t smell awful. I think we may try these again next time.
Nordic Naturals Cod Liver Oil (orange flavor) is what Rory is currently on. It has vitamin A added so some people don’t do well with it, plus the orange flavor causes some reactions in others, but I’d say this is the best tasting one we’ve tried and has high DHA.
Step 3: Omega-9s/Olive Oil…for the little ones, simply cooking with REAL extra virgin olive oil (EVOO) is perfectly fine, but actually supplementing with it as well is recommended for bigger kiddos and adults. My goal is to add a few glurgs of it to everything I cook and sneak it in as much as possible into everything. The California Olive Ranch brand is what they recommend, and I was able to find this at Publix. Note that 75% of olive oils out there are actual refined soy oil, so make sure it’s a certified extra virgin olive oil.
- NO probiotics are allowed on the protocol since this actually feeds ALL of the bacteria versus the inulin that only feeds the “birds” and not the “fish” which you are trying to send back to their home in the colon. Also, Dr. Nemechek says that introducing probiotics is like adding “lizards” into the mix. (Note that inulin is a PREbiotic not a PRObiotic.)
- Reduce omega-6’s in your diet, since these increase inflammation and that’s what we’re trying to get rid of. When buying processed foods, you can buy things with canola oil, coconut oil and palm kernel oil, but NOT with soy/soybean, sunflower, corn, safflower, cottonseed, grapeseed peanut oils, margarine or shortening. This is HARD because as you will notice when you start checking labels, omega-6 is EVERYWHERE. It’s no wonder we are so inflamed!
So how quickly can we expect this to work? It’s going to require some patience. The analogy Dr. Nemechek uses is that it can be compared to hair growing…you don’t notice it growing a tiny bit each day but after a month you will notice a small change and after a few months you will need a haircut. He says you can make up for about 2-3 months worth of developmental-delay catch-up in about 1 month, so Rory’s 2 years worth of delay should take somewhere around 1 year to rebuild. In the 2.5 weeks since we’ve started, we have noticed that she has been more engaged with her therapists, sign language class, Gemiini therapy videos and us in general. She is making more sounds, trying more words (broccoli, Peppa), trying to mimic our words/sounds and things like sticking out her tongue (which we have had a HUGE challenge getting her to try), and perhaps the most significant, she has been crying when she gets hurt, which is HUGE because she has always had such a huge pain tolerance from sensory processing disorder (she can fall down, skin her knees and not shed a tear), so the fact that that veil is falling points to the “awakening” that Dr. Nemechek promises.
Here is a post that discusses all of the issues the Nemechek Protocol has been known to help. Like I said, I still don’t know if this is Rory’s magic bullet, and it very well might not be, but this is the first time I have read an extremely rational scientific explanation that explains why something is happening AND shows how to fix it. When your child is unable to speak to you, you are willing to do pretty much anything to help them find their voice, so I will keep trying until we find it.