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 brain dump, and I have always written with my odd sense of humor. Anyway, I had spent years threatening to write a book titled “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. There were so many ideas and so many things to try that my husband and I would become overwhelmed with options. It seemed like dancing in the rain was a good chance as any to recover him.
Ultimately, that diagnosis became 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 it seemed to be a broad 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 came 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 remained ongoing challenges, and some treatments have been revisited, but I attempt to keep it all on a fairly linear timeline. 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 doing it, where we were at the end, whether it helped or hindered, and how much it eventually cost us. I am going to endeavor not to 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. 🙂
Motivated
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 have personally traveled far and wide, leaving no stone 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 there were somewhere to find all this information without spending thousands of dollars, and to have 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 about doing this, doing 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 my opinions on what we have already done and why, or what we might plan to do 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
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 fee schedule. 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 😀 Want to work with me? Find more information here
Please be aware, in an effort to recoup some of these sky-high medical costs, I do very occasionally display affiliate links on some of my pages. What are affiliate links you ask – some pages will have links that are not commission-based links, no one pays me for those reviews or that information, you can click all day on those and purchase but I don’t receive any compensation. However, occasionally there are products I love, AND I can earn a small commission if you buy using the link I provide on my pages. You are under no obligation to purchase through these links, but I appreciate it very much when you do. These are called affiliate links, and in return, I receive a small commission from the product’s manufacturer. Consider me a virtual shop assistant. Please note: I never post any affiliate links to things I don’t like, use, need, or find helpful.
I post both Amazon affiliate links and independent affiliate links and will always let you know. Thank you for understanding, supporting, and purchasing these items when you see the benefits and have a need.
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