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

About Dancing Naked Around Bonfires & Other Cures for Autism!

Or maybe it should be:
Dancing Naked Around Bonfires & Other Cures For “insert letter disorder here.”

During the past 13 years – (I created this blog in 2011 and updated it in 2013 when B was 9 years old and now it is late 2017) – 13 years after this story began and we are still not completely where we need to be mentally, physically and spiritually.  I have, and still do, continue to spend every waking moment, and many sleeping moments, thinking, doing and trying different treatments for the various letter disorders given to our son and after a while, our daughter. Initially, this blog title was a joke. I spent years threatening to write a book with the aforementioned title. Nothing describes our journey more succinctly than “Dancing Naked Around Bonfires and Other Cures for Autism.” Autism, because at the time I began writing this, our son had an autism diagnosis, although that has fallen from favor and in 2013 we were going with “ADD, RAD, Depression and Anxiety” titles but now, PANS is our diagnosis de jour and honestly, this one fits the best “Post Infectious Autoimmune Encephalitis (inflammation of the brain) or Encephalopathy (a general term describing a disease that affects the function or structure of your brain) depending on which doctor you discuss this with.

Dancing Naked Around Bonfires and Other Cures for Autism, came to fruition after I looked around and saw how many different treatments were touted as beneficial to healing spectrum disorders, some as we found out over the years are legitimate, some are scary (we chose to avoid those), some are dangerous (and these) and some just have merit in the minds of the practitioner and finally, some are so ridiculous you can’t help but laugh because hey, it’s important to also see the funny side of this life!

I have finally woken up and come to the realization that it doesn’t matter what letter disorder is de jour, everyone has super conflicting ideas on how best to treat it!

This blog is my gift to others in our situation. I will hopefully, in some order, chronicle our history from age 11 months to 7 years originally, then 9 years, and now 13 years which is where we are age wise in our journey now. This became difficult at times as some things have been ongoing and some have been revisited but I attempt to keep it all on a fairly linear timeline/track.

I also try to, under very clear headings, describe each treatment and modality we have undertaken, what we found out while we did it, where we were at the end of it, whether it helped or was a hindrance and how much it eventually cost us.  I am going to endeavor to not actually identify myself on the blog purely to protect my son’s (and now my daughter’s) personal information; however I hope to answer all your questions on this blog anyway – please feel free to ask questions via this forum. 🙂

I decided to blog as I get emails from time to time from other people asking about one treatment or another and our experiences and I enjoy picking other parent’s brains about what they have found effective. A collaborative effort is often helpful for both parties when working toward a solution. Most people around here know we have traveled far and wide and left few stones unturned in our quest for answers and solutions, to help both our son and our family as a whole. I have also spent many hours collaborating, emailing and talking to parents who have also tried multiple resources and often wished there was somewhere I could go to find all this information without spending thousands of dollars or at least knowing what to expect if I decided to take the plunge.  Sometimes even my own sanity has had to be addressed with a large bottle of something only over 21’s can get their hands on 🙂

This isn’t a let me help you blog, this isn’t supposed to be an open forum as such but I do welcome treatment thoughts, comments, and experiences if it will help other people choose where to spend their money and how to get the most for their children. I will try to relay our journey in the hopes that someone might benefit from the information. Although I personally have no ego involved in opinions on what we have already done and why or what we might plan on doing in the future, feel free to agree or disagree if it did or didn’t work for you. I did what I thought was right at the time and we undertook every treatment in good faith and with an open mind, and oh how sometimes our minds needed to be OPEN! Some treatments caused us to relive sections over and over while laughing hysterically and taking turns playing the part of the latest practitioner. Please feel free to add your own mirth where you deem appropriate and that way I won’t feel like I am being mean 😀

I have to say everyone we have met so far has been genuinely convinced that A: they can help and B: they are 100% legitimate in their treatments, regardless of how much they charge and how easy they find it to keep a straight face when giving their schedule of fees. It is with that in mind that I will write from as factual a basis as possible with the least amount of personal conjecture. This is just what happened, how, when and what we thought were positive or negative results from the treatment. I hope this will allow you to add or delete options based on our personal experience.

You can reach me via this blog, leave a comment, sometimes I actually post them 😀

© Loving the Spectrum