On April 28 2012, the first PANDAS Parent Symposium took place at Embassy Suites by San Francisco Airport. One hundred people gathered from around the world - from 4 countries and 10 states, parents and providers - to discuss everything PANDAS.
Lance opened the Symposium with this talk, and I would like to share that with you. We were hoping to post the video on the conference website site - but the videographer lost the memory card!!
"HI, I'm Lance. Thank you all for coming here today, be it from Sweden, England, Oklahoma, or from nowhere far away. Thank you, not necessarily on my behalf, or on behalf of my mom and everyone else who was majorly involved in putting this on, but on behalf of your kids, who may not consciously be thanking you. Perhaps they haven't had the opportunity, but maybe they don't feel very thankful right now. I don't blame them.
If everything were perfect, you wouldn't be here right now, would you, from Sweden, England or Oklahoma? If PANDAS were easy to deal with, you would not have been encouraged to attend this "symposium". Some of your kids suffer from nonstop anxiety attacks, disruptively unbearable physical tics, OCD or plenty of other symptoms that may, in the past have been labeled as stress, abuse, a need for attention, psychosis, or apparently at one point in my life, Asperger's. I'm sure many of you have been condemned to the incurable and misunderstood Tourettes' Disorder. I was for years.
Many of you have kids who have been poorly taken care of by any kind of doctor that exists, and who have been convinced that antipsychotics and antidepressants like Adderall, Prozac, Zoloft, Tenex and Thorazine will cure them of something that they think might even be their fault. Yet, these one-size-fits-all cures probably only make them worse in every way.
So you're here. By now, you've caught on and at least considered that your child has a disease called PANDAS, Pediatric Autoimmune Neurological Disorder Associated with Strep. Its not perfect, but I refer to it with my friends as "strep brain". The symptoms of PANDAS generally instigate a plethora of impacts on lifestyle. When various body tics and increased levels of OCD-like symptoms first bombarded me at the age of 10, we couldn't really do anything. I commanded much more attention out of my parents' lives. We couldn't travel much for several years, and sleep was out of the question. While I was still functional (on the outside) and rarely had to miss time at school, in sports, or with friends, every day was an absolute struggle. I think many kids with body tics, as opposed to more mental effects of the disease, the problem isn't as much physical discomfort as the obvious visual effects that would be caused by involuntary and repetitive motions. But for me, it was the physical discomfort, primarily in my right ankle. Still is the case, although not as bad as it was. I can't explain it well now, and I definitely couldn't back then, but the feeling per se in my right ankle on my right foot legitimately drove me insane at times. Not pain, which some people never quite understood. Just a really bad physical discomfort. Rolling and / or twitching my ankle would relieve it, yes, but for only half a second, and then the feeling in my ankle would come back. So this was worse than a typical involuntary motion.
Still, some people have had it worse. So many of you have kids who can't go to school, or make friends, or play sports, or really do anything. In fact, some of your kids don't even allow you to touch them. As I've had agonizing physical tics and severe OCD caused by PANDAS, I have both managed to and been able to conceal my problems from those who don't know me very, very well. Too many people aren't as "fortunate" as I am. Also, many of you have not gone through all the possible medical options that I have, which is both good and bad. While in the past six years, my family has poured shocking amounts of money into taking care of what I have, and I have wasted so much of my life in the sheer time alone with useless doctors, we've figured things out pretty well. I could make a spreadsheet. Things that never worked: massage therapy; past life aggression therapy; unusual California shamans; various anti-stress and antidepressant medications; neuro-lynguistics programming; basic psychotherapy; numerous diets (except for going gluten free due to the fact I also happen to have severe Celiac disease); acupuncture; and a cluster of other things I have shunned from my memory. Specialized chiropractic work, intravenous immunoglobulin steroids, taking Motrin before bed, and quite recently a tonsillectomy, all seem to have been great strides. Hopefully my documented trial-and-error will help other people deal with their illness with more ease.
I'm 16 and have a good share of knowledge in this area, and I've seen and heard it all before. I've been a bit hardened by 6 years of my mom swearing that he next person we go to is going to fix me, and my intuition when dealing with people has become stellar. I've also learned better how to put myself in others' shoes, and on the other hand, how to teach others to do the same.
So hopefully, if you are one of those whose life is in pieces in all ways, and if in particular, you are having trouble in your relationship with your PANDAS kids, you will take my word for it and know that your kid thanks you for coming here. Maybe they act like they hate you, or that this is all your fault, but the truth is, if they know as much scientifically and about life as I have, then they do appreciate you. Simply through years of asking and listening and wondering and accumulating, I know more about PANDAS than I should have to.
But what I know about the science of it doesn't matter too much. I know that I and my tics and/or mental impediments are entirely separate entities, that I am ok, that I am consistently getting better, and that I will continue to improve health-wise until my PANDAS is gone. Thus, I can thank my mom for putting this on, and for being here. But not all your kids have the amount of years that I do, nor do they have the info that somebody who has lived my life does, and I"m sure that some of them aren't capable of thanking you for doing what you do for them because they don't have any idea what's wrong with them nor that you're in the process of fixing it. So I can thank you for them, because if all those kids knew what there was to know, they'd thank you too."
(Here is the PANDAS Parent Symposium website - it is somewhat out of date (as of 12/19) but nevertheless - loaded with PANDAS info! www.pandasparentsymposium.blogspot.com )
No comments:
Post a Comment