To My Dear Ones, Friends and Family
2010 is over. For the first time in a long time, I have entered a new year actually feeling somewhat new. More than that, even. I have entered a new year feeling like myself, plain old Amy, a feeling I have not recognized or experienced in well over 4 ½ years and certainly ever since we left Georgia and moved to Northern California. It is a blessing unlike any other.
How could such a miracle have happened, you may ask?
My darling son, who is 14 and will be 15 in just 3 months, and who has lived well over a third of his life being sick, has turned the corner. Truly, we have made immense progress dealing with his terrible illness. So aside from the wow! of having him feeling so much better and returning to a semblance of normal life, the sheer release of my entire life force being sucked up in the worry and management and the sorting and the constant having to figure it out – its like, having a brand new life.
You may recall that the very day the moving truck came to load up our stuff from our home on Azalea Drive, that very day July 7 2006, Lance developed tics in his ankle which within days, then weeks and months had spread to include many motor tics and even vocal sounds and grunts. At the same time he launched into this OCD thing which got pretty intense at times. So by the time we arrived in California after driving cross country poor Lance was a mess, and so was I. And it just went straight downhill from there.
After a parade of health care providers, diagnoses and therapies Lance was diagnosed with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus infection (PANDAS). In other words, a spread of strep from a seemingly simple strep throat to the brain, triggering inflammation (encephalitis) and ultimately an autoimmune attack on the brain itself which is what created these symptoms.
In reality, this most likely began when Lance was between 4-6 years old. Lance had chronic ear infections. He did have some transient tics in first grade but we never made anything of it. He started having more symptoms emerge in fourth grade, shortly after his first known strep throat (looking back) when all of a sudden his handwriting deteriorated and he developed what the physical therapist called a “trunk ataxia”. At this time he was diagnosed with sensory integration disorder and started nearly two years of weekly occupational and physical therapy.
Just before he turned 10 he had another very severe strep throat with a rash. That must have been the threshold or trigger or something, and the tics began shortly afterwards. This is the common scenario for PANDAS children.
It got to a point where it was harder and harder for me to be in touch with friends because our world got really bizarre. The stress caused our already crumbling marriage to completely fall apart. With Lance’s health issues, I was unable to really work as I was holding everything together and I ended up at school with him a lot because of the tics and anxiety, and just the exhaustion of being up all night online poking around looking for information. The business idea that we moved here for completely fell apart and with the economy, we never recovered our ability to support ourselves. Thus, I spent my life savings on covering not only our bills but Lance’s escalating medical expenses. Kaiser, our insurer out here said they only follow certain testing and treatment protocols and never could figure out what Lance actually had. His pediatrician literally told me, last summer “There is nothing we can do to help your son”. We were forced to pay out of pocket for everything we tried (just a few months ago I was able to get him onto a blue cross policy despite his prior medical issues due to the new health care bill.)
Meanwhile in the fall of 2009 we went to an integrative pediatrician with whom I’d started working over the summer, and he took a full-on medical detective approach and really thought about Lance’s story, and did a lot of testing. Thousands of dollars of testing later, we discovered 2 things. One is, Lance had really severe celiac disease, which in and of itself is an autoimmune disease responsible for many symptoms such as his lifelong heel and body pain, his food allergies, his rashes and abdominal cramping and puffy inflamed tissues. Wow. But he also diagnosed Lance with PANDAS.
After a few months of removing gluten from Lance’s diet and helping the intestinal tissues to heal, he began to feel and look so much better. We started him on antibiotics last January. Meanwhile Lance was preparing for his bar mitzvah, which was the end of last January. It was wonderful and moving and amazing. People came out, Lance’s grandparents from Florida and my very dearest oldest friend from Colorado, and there were huge outpourings of congratulations. How he continued through this journey and stayed focused on living, playing sports, and excelling in school without complaining and just trying to be as much like other kids as possible, well, that’s so moving to me.
Barely two weeks after the bar mitzvah, on Valentine’s Day, my appendix decided to explode, and I ended up in the Kaiser emergency room (where they at first misdiagnosed it as an ulcer and sent me home which is why it exploded in the first place), then in surgery and in the hospital for 9 days. That sucked but it would have sucked more had it not been post-bar mitzvah. Afterwards I was out of work for two entire months which was very scary for us because we had already spent most of our cushion. We sucked in our belts even tighter. Thank G-d for our friends, who helped cart Lance around to his various activities, brought food, sweet company, movies and loving dressing changes and so much care. And even pajamasJ
By May, Lance had been on antibiotics for months. The tics had diminished at first but then they came and went to their own rhythm and there was little we knew to do. PANDAS is a very newly understood phenomena and only even given a name within the last 15 years by a researcher at National Institutes of Health, and thus very few physicians know how to diagnose or treat. Once the strep infection is no longer “acute”, it doesn’t really go away with antibiotics. The antibodies continue to attack the part of the brain called the basal ganglia. At this point the treatment is huge – plasmaphoresis, a process that filters the antibodies out and returns the blood to the child – producing a startling but fairly short term recovery (as the body continues to the produce the antibodies); and / or treatment with IV immunoglobulin, a blood product with corrective properties and can literally cure PANDAS if treatment is started prior to puberty. Meanwhile, Lance was already 6 feet tall with a hairy body and deepening voice and so there was a real worry and pressure that it might be too late for him, and it was so scary. We chose the IV immunoglobulin therapy (also called IVIG).
Also meanwhile - my nutrition practice greatly suffered. I lost many clients due to the fact I was completely distracted and exhausted and didn’t have enough brain power to take care of them. I could barely show up, sometimes missing appointments and sometimes after only 3 or 4 hours of sleep, pretending to think or even care. Oy vay. So I continued to bleed our dwindling resources.
Also meanwhile, insurance rarely covers IVIG for PANDAS as they consider it experimental at best. The cost - $15, 000 – WHOLESALE, directly to our medical office and with us doing the 2-day infusion ourselves. Retail, over $20,000. If we had the treatment at Stanford Children’s Hospital – over $50,000! Ah, but I was quite resource depleted by this point and became desperate to find the funds. I contacted every single organization I could find, or that people suggested, trying to get help to treat my son while the treatment window was still open. I couldn’t think of anything else, I was completely consumed by the need to cure my child before it was too late.
So last summer, Lance’s godparents put together this website which became a tool through which we began to solicit funds. But by September we had barely made any real progress, so friends came together and put on an event to raise the money.
At first I refused to do an event. This whole thing was humiliating – I should have had the resources to take care of my own child!! But I didn’t. Plus, I have a public face in the community – I’m a nurse practitioner and healer in my own practice and it felt too revealing and awful. So what does a parent do in that situation?? Well, I discovered that the answer is – Anything. You do anything there is to do. You ask, you beg, you pray, you stay up for days, you become the most humble the essence of humility. You say yes yes yes thank you yes yes yes thank you even when you are used to saying no thank you.
(Here is the event website is http://helplance.info/)
The event was the most extraordinary experience in many of our collective lives. At least 200 people showed up. We had over 100 donated items in the auction! Volunteers set up and collected money and ran the raffle and the auction and played music and managed an entire stage show and even the place was completely donated. I rode on the assembling of energy and people and love in a way I can still barely put the words to. More on that later. Money poured in and we raised everything we needed to treat him. Which we did immediately, over Thanksgiving.
Typically, when treating a PANDAS child with IVIG whose symptoms include motor tics, it is seen that the tic symptoms may not go away or even diminish for as long as 6 or even 8 months WITH a successful treatment!!! I think that’s because the part of the brain associated with the tic movements has so much inflammation that it takes months for the treatment impact to work its way to that depth.
But Lance started seeing results immediately, within one week. And the tics have continued to lessen over this past month, with a little flurry a week or so ago. We do not expect a “linear recovery” as one PANDAS mom put it, but probably changeable or even erratic, moving towards resolution. There is an 80% chance Lance may not need a second treatment.
I think the reason Lance is having such excellent results with IVIG is because we have done so much work on his health already. Years of structural (cranial) manipulation – some of his head bones have been literally repositioned to take the pressure off the cranial nerves which always helped a lot. Years of reducing inflammation with herbs, enzymes, and the like. Finding out about the celiac which in my opinion is likely the reason he developed PANDAS in the first place – the immune stress created by the celiac from birth made it harder to get rid of a particularly virulent strain of strep. Oh, Lance has had everything from medical to osteopathic to acupuncture to shaman healing sessions, you name it. We live in the mecca of alternative healing and desperately I was willing to try it all.
Almost six weeks out from IVIG, we’re doing great. And I have begun my own personal recovery process, which is how this letter started. Within the depths of despair in 2010 have also come the highest of heights.
Our community. Community. COMMUNITY. How can one live separate than the community?? I had fooled myself to thinking I was alone, out of habit and out of shame. All I could see was myself as a single mom with a sick child and depleted resources. But in reality, we are never that alone, it is only a thought that we are ever really that alone. A single thought can change that, for a moment or for a lifetime.
Thank you’s and Connections – cousins and family that showed up after decades of separation. Friends old and new. Sisters, brothers. Neighbors. Local business owners. People that just knew Lance from school and were shocked to learn all he was overcoming daily. People that didn’t even know Lance but were moved by his story either through an email or a friend or family member. Friends. Our congregation. Healers. Friends. JFCS. The SA community. Friends of friends.
Paying It Forward - Through our PANDAS experience we have reached out and connected to many other families with children going through similar experiences. So, we have started a treatment program for PANDAS in our office!! We have networked with the few PANDAS researchers, NIH, labs and treatment teams and are now offering diagnosis and treatment for these very deserving, often exhausted and baffled families and their children. We are honored to be a part of this journey and to contribute what we can to the growing body of information about PANDAS. Here is our website www.hillparkmedicalcenter.com
Is Lance totally better? I don’t know!!
Will he need another treatment?? Gosh, I hope not. But if he does, we know what to do!
I deeply hope your life has been better. No doubt it’s been rich with its own up and downs, and you have your own reasons to be grateful that 2010 is really over.
I wish you peace and every possible blessing in 2011 and beyond.
What Did I Learn from This?? There is always, always hope. Please do not give up on your child.
LOVE
Amy
