Loving the Spectrum
Over the past 18 years (I started writing this blog in 2011) I have continued to spend every waking moment, and many sleeping moments, thinking about, wondering about, and trying different treatments for the various letter disorders given to our son and after a while, our daughter. Yes, it is astonishingly 18 years since this story began, and yet we are still not completely where we need to be mentally, physically, emotionally, financially, and spiritually. I really thought by now, this would be a tale of triumph and a road map to hope for others, but our story is not over yet.
Initially, my blog was created as a joke. I had spent years threatening to write a book with the title. “Dancing Naked Around Bonfires and Other Cures for Autism,” because at the time I began writing, our son had an autism diagnosis and we were on a road trying to recover him. That diagnosis has become lost in the pile as doctors continued to add more: ADHD, Attachment Disorder, Depression, Anxiety, Bipolar, Epilepsy, OCD, and eventually the umbrella of P.A.N.S. was what seemed the best fit for our kiddo, well until we learned about GLUT1. The problem is, the symptoms tick so many boxes it can be difficult to know what is what, what causes what and what is a symptom of something else. Eventually, we settled on the P.A.N.S. diagnosis as that seemed to be a large umbrella term for what this might be.
What is P.A.N.S.? Post Infectious Autoimmune (or Basal Ganglia) Encephalitis (inflammation of the brain) is triggered by an infectious, bacterial, or viral process and affects how our children act, react and interact with the world.
P.A.N.S. is either real or not depending on who you discuss this particular diagnosis with, and with that controversy comes many expensive and potentially ineffective treatment protocols. This is probably why we all have such a hard time recovering our children.
This blog was borne out of a quest for recovery.
There have been so many different treatments touted as “the one” in healing these spectrum disorders. We are just one more family wanting to heal our child(ren) more than anything else in the world. Some of these treatments, as we found out over the years, are legitimate, some are scary (we chose to avoid those), some are dangerous and some only have merit in the minds of the practitioner.
Truly, some treatment options have been so ridiculous we couldn’t help but laugh as we paid our money and jumped in with both feet anyway (we can claim self-care here because as we all know to be able to laugh, we are continually told, is so important in life!!!)
Eventually, we woke up and come to the realization that it doesn’t matter what THE letter disorder is, everyone has super conflicting ideas on how best to treat whatever “it” is!
This blog is my gift to others in our situation. My goal was always to chronicle, in order, our journey from 11 months old, when we first saw a change in our child’s functional abilities, to where we are now – 18 years and counting. This journey has been so difficult at times, some things have continued to be an ongoing challenge and some treatments have been revisited but I attempt to keep it all on a fairly linear timeline/track. It gets a little more confusing when we add treatment for child #2 as the dx of P.A.N.D.A.S. became a reality for her later in life.
I try, under very clear headings, to describe each treatment and modality we have undertaken, what we found 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 or email. 🙂
I decided to blog because I needed to get this out of my brain. There is now a huge online community sharing information on treatments and experiences but when I started writing this, that wasn’t the case.
I love hearing what others have found effective but I am interested in outcomes, a week, a month, and a year after treatment. A collaborative effort is often helpful for us all when working toward a solution. We personally have traveled far and wide and left few stones unturned in our quest for answers and solutions to help our family as a whole.
I spend many hours collaborating, emailing, and talking to experts, practitioners, and other parents who have also tried multiple resources. We all wish for somewhere to find all this information without spending thousands of dollars and having an idea of what to expect if we decide to take the plunge. Online forums can be so noisy for me, one question asked with 500 different or the same answers, some encouraging, some with new information, some adamant do this, do that, and some just not very helpful at all.
Sometimes my own sanity has to be addressed with a large bottle of something only over 21’s can have and a good conversation with a friend who just “gets it!” 🙂
This is just me, our journey, my thoughts, my experiences, my hopes, and my dreams but I actively welcome other people’s treatment ideas, comments, and experiences especially if it will help other people choose where to spend their money and how to get the most for their children. I do try to relay our journey in the hopes that someone might benefit from what we have done.
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)!
Never Give Up Trying
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 our treatment pieces 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 of 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 😀
Brenda Allen says
I think this is a really great blog and will be so helpful to worried parents out there. You can be taken in by people who have the aura of knowing every thing and really it is trial and error with your own child that will give you the results you dream of, don’t despair just have faith that things will turn out good and just keep trying, no matter how tired and downhearted you are. Good luck to everyone who is looking for answers.