2 PANS kids fighting lyme and coinfections, our journey to healing


On Valentines day we met with the practitioner in a hotel suite in Charlotte. This particular person chooses to travel to the families several times a year with the knowledge of how difficult it can be for the families to travel to a central location! Oh yes, who hasn’t wished they were not on that particular plane, with that child, that day?? For this, if nothing else I was truly appreciative.

The initial evaluation is $650 and takes about 2.5 hours, possibly a little longer. My son was totally uncooperative for the entire appointment. Not disruptive but more noninteractive if anything. He sat behind the couch playing Nintendo DS until it was time to talk to him. Then he crossed his arms and legs and sat as still as possible. He resisted any attempts to move him. Eventually he got up, kicked me, hit me several times, left, came back and left again. After a few minutes the practitioner felt she had enough information from our conversation and his behavior to give us a complete plan anyway.

We left with a 1 hour followup appointment set for May.

So far we have completed 2 days of neurological reorganization which is of course in no way long enough to asses the program.  I will keep updating this particular page with the neuroreorg progress. So far we have about 45 minutes to an hour of daily PONS work to do. So plenty of army crawling, creep crawling and vestibular work. I confess my son is being bribed to complete each daily session, the 1st day we completed less than half, yesterday was better and we completed almost all our exercises. He is earning 1 point for every minute he completes. I haven’t really figured out the point system yet but he will be rewarded in increments relating to his point value. 45 points = fun game with Mum, 4500 points = $5.00, 45,000 points = video game, something along those lines I imagine. He is VERY motivated to save for the bigger prizes as his teacher and I have both discovered during this year in particular.

If you are interested in learning more about neuro-reorg by people who have done this work there is a yahoo group. Go to Yahoo Groups and look for NeuroNetwork.

Personally, just from my own research, I am convinced that some type of neuro reorganization, brain balancing, brain integration, or any of the other host of similar modalities can really make significant changes for these kids, but I think this work needs to be done as one of the first treatments along with gut healing and diet changes. I think doctors should consider in their pediatric evaluations all of these types of input. If for instance, we know that the child never crawled correctly, or didn’t complete certain mile-stones it can be addressed straight away. Now I am in a situation where I think it would behoove my family to take my kid back to what was missed and allow the brain to complete that part of his development.  I wish I had done this before I moved on to alternative therapies.

Unfortunately often this type of neuro fine-tuning takes work! The commitment could be as much as every single day for about 18/24 months, I personally was looking for something more speedier, more convenient, more, well easier to be honest. Unfortunately I am now of the thinking that this needs to be completed, no matter how hard or time-consuming, before going on to the next steps.

To learn more look for studies related to Cognitive development, Motor development and relationships to both,  in your search engine. Some books that were recommended to me before I considered neuro reorg:

  • Neurological Organization and Reading: Carl Delacato.
  • The Brain: Northwest Neurodevelopmental Training Center (503.981.0635)
  • The Mind & The Brain: Jeffrey M. Schwartz
  • The Body’s Many Cries for Water: Dr. F. Batmaghelidj
  • The Well Balanced Child: Sally Goddard Blythe
  • If Kids Just Came With Instruction Sheets: Svea Gold
  • Disconnected Kids: Melillo, Dr. Robert

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