Finally some progress – Healing Autism and Reversing Developmental Delay

It’s been a very long time since I have posted, mainly, because I had nothing really positive to report.  We have had no breakthroughs or sustained improvement in years, only setbacks and loss of skills for my son Dante.  There is a little light at the end of the tunnel though, and I would love to share it.  I believe a lot of people may benefit from it as Dante has.

December 2018

If you have read my previous posts, you may remember that Dante has these characteristics:

·       Born with very low muscle tone

·       Huge developmental delay - since birth

·       Horrible gut pain - since birth

·       Constipation

·       Very low energy

·       Virtually no fine motor skills

·       Weak gross motor skills and coordination

·       Non-verbal (a couple of words and signs only)

·       Seizures since age 7, which made him lose even the few skills he had

We know that past efforts to help balance Dante’s gut have been the most helpful, including the Specific Carbohydrates Diet we did a long time ago, the Modified Atkins for Seizures, and being GFCF (Gluten-free and Casein-free) since he was three.  Up until now, however, no efforts that healed his gut were helping him neurologically to regain his lost and his never-developed skills, nor his pain.  Enter the Nemechek Protocol. 

My simple summary of what’s going on per my understanding of Dr. Nemechek is that intestinal bacterial overgrowth produces propionic acid which, when excessive, leaks from the gut and causes tons of inflammation.  This inflammation does not allow the brain to heal from small injuries that it should naturally heal from with some time.  I understand this is the gut-brain connection I have so often observed in Dante but could not really explain.  The interesting thing is that if this level of inflammation is present at birth then the natural development of the brain through a process called “pruning” is impaired and so the child cannot develop properly. This protocol works to reduce inflammation so that the brain can heal itself.  And start to develop where it left off earlier.  See a way better summary here.  Finally, I can see how this connects Dante's gut issues with his huuuuuge developmental delay.  Cool.

The Nemechek protocol is super simple, here are the basics (way more detailed in his book, which actually works for adults as well as children):

·       Re-balance intestinal bacteria with inulin (a prebiotic) for younger folks or Rifaximin (a non-absorbable antibiotic) for older folks

o   Probiotics are prohibited as they add bacteria to a place that already has a mix of bacteria causing havoc. 

·       Use omega-3 (mainly DHA) to flip cells to an anti-inflammatory state

·       Stop consuming omega-6 fatty acids found in seed oils as these are pro-inflammatory.  Eliminate these oils from your diet:  Soy, Sunflower, Corn, Safflower, Cottonseed, Grapeseed, Peanut, Margarine, and Shortening.  Use coconut, canola, and certified extra virgin olive oil instead.

·       Use certified organic omega-9 (Extra Virgin Olive Oil - EVOO) – about 2 tablespoons a day for adults

·       Adults should also consume ¼ cup of nuts, flax or 1T chia for the ALA component of omega-3

·       Last, take additional steps to restore the natural neuroplasticity, basically, help the brain form new neuronal connections.  Dante being such a severe case, we decided to add this in November 2018 with trans-cutaneous Vagus Nerve Stimulation (tVNS) therapy prescribed by Dr. Nemechek.  Most patients don’t need this but after about 8 months on the protocol and small progress compared to most kids, we decided to go for it.  Also, implanted VNS devices have been used for seizures for a long time and I wanted to see if it would help Dante in that area as well.

Here is the update I just sent Dr. Nemechek today:

I wanted to give you a quick update on what we have observed in Dante since he started using the MyVNS (5 min per day), 6 DHA, lots of EVOO, no bad oils:

For context, Dante has had seizures for about 8 years now and the tiny skills he had prior to seizures regressed almost fully during these years.  He barely uses his hands and it’s difficult to get clear responses from him via choices.  He barely speaks but attempts to communicate in non-verbal ways.  Here is what we have observed:

+ He is having considerably less pain than before.  He still had a few days of horrible pain before seizures a few weeks back.
+ We’ve observed a slight decrease in seizures.  The 6 weeks before we started MyVNS he had a total of 17 seizures.  The 6 weeks since starting the VNS he had 12.  That has already made a difference in our wear and tear here at home.
+ Much more energy than before, more active throughout the day and able to walk longer distances (such as on a trip to Target) without needing to sit down.  Before he seemed fatigued for a good part of the day and would often be sitting around “resting”.
+ Standing steadier, less shifting from foot to foot.
+ Walking “loser” whereas before he was walking with more difficulty, like an old man.  It is also easier for him to find a chair and coordinate sitting down.
+ Using his hands more to grasp.  Not so much fine motor as in pincer grasp, but using his hand to hold on to me.
              + A huge example of this was his therapist who knows him since 1st grade (he’s in 8th now) saw him reaching for a speech button on the table in front of him to respond.  She says she has not seen him reach like this since the 1st grade.

+ Responding better and showing understanding.  Lots of reciprocal smiles.  
              + A huge plus is his teacher told me he is FINALLY answering questions by making a choice.  He does this by tapping one of two choices presented to him with his head.  He may try to grab the choice as well, but his hand is not very coordinated yet.  This kid has not had any gains in school in YEARS, only loss of skills.
             + We went to a neuro appointment and when the nurse called him in, “Dante __!”, he responded and was ready to go.  He has NEVER done this in his life!
             + Another huge example is I said to him my hair was a mess and he actually looked at my hair!  

+ He is looking around with curiosity
+ He is drinking lots of water 
+ He has been pooping perfectly almost daily without the help of Aloe water.  No messy toxic poops nor constipation as before.

As the brain heals, the kids often experience a surge in energy and awareness.  The doctor calls this the “awakening” period.  We are definitely seeing that with Dante as well.  The other day I danced with him and the next day my helper, Maria, was dancing with him and Dante said, “Dance!” – a word he has never said before.  He hasn’t been speaking for years.  He said “Mom” the next day and when we asked him, “Dante, did you say ‘mom’?”, he said, “Yeah!”.

There are a lot of ways that unbalanced gut bacteria is aggravating inflammation and impacting our brain and nervous system.  I encourage you to leverage this doctor’s ability to connect so many of these dots and see if this could help you in your healing journey.  I hope I have more positive posts coming soon!

Helpful Links:

• The Doctor's Explanation of the Nemechek Protocol
• Nemechek Channel on Youtube  - where he explains this stuff in way more detail
• Watch this Powerful Story of Recovery - These symptoms apply to adults & kids!
• The Book – The Nemechek Protocol for Autism and Developmental Disorders
• (Independent) Nemechek Protocol Facebook group for Adults
• (Independent) Nemechek Protocol Facebook group for Kids – huge amount of information and support