Two years ago, to the day, Lance had his first IVIg treatment. And it was a miracle, through and through.
It was a miracle that we pulled it off and raised the funds (see earlier posts regarding the powerful community event that raised thousands of $$ for Lance's necessary treatment when the insurance company declined it). It was a miracle how much it helped him, for a year, it was like, a new possibility opening up of nearly normal life for all of us.
We knew back then it was possible and even probable that Lance's illness would require an addition treatment. It took years to diagnose his illness - years. PANDAS - Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. (see earlier posts and right sidebar for full explanation of this dreadful disease). An easy way to understand it is when a child has strep and then it spreads throughout the body and for some still very unknown reason it crosses the blood-brain-barrier and causes encephalitis - inflammation of the brain. And a bunch of overnight neurological and psychiatric changes and all of a sudden, one day, you wake up with a completely different child.
Doctors for years told us that this was an anxiety disorder - Tourettes' disorder - OCD - his fault, my fault, my husband's fault. We went doctor to doctor to doctor, nearly 40 different providers, until someone was finally thoughtful enough to diagnose him with this very rare but very real illness. We spent every penny we had on his medical bills, since we had Kaiser insurance and they would do nothing except prescribe him endless psychiatric medications, none of which did anything, and his pediatrician literally said to me, "There is nothing I can do to help your son." And meanwhile, the brain inflammation continued to ravage, distort and destruct his senses; create bizarre painful random movements and tics; generate weird repetitive thoughts, interfere with cognitive processing, coordination, control, and essentially steal his old life away.
Well, we have come a long way since then. The awareness of PANDAS has come a long way since then. Hundreds and even thousands of PANDAS parents connect now from around the world through blogs and facebook pages and support groups. We produced the first ever PANDAS conference in April, by SFO, and it was attended by well over 100 people from 4 countries and 10 states, coming together to try and fill the hole in diagnosis, treatment and care of these very sick children and their terribly stressed out families. (here is the website www.pandasparentsymposium.blogspot.com)
There have been other conferences now; over 300 research papers; dozens of articles in the press (newspaper, magazines, TV, books not to mention more than 20 PANDAS-based educational websites and PANDAS Radio, a twice monthly web-based call in show, featuring the very few medical professionals who actively research and treat PANDAS children around the country.
Meanwhile, here we are again. My son needs a medical treatment that once again, insurance has denied. They call it "medically unnecessary" and "experimental". Well, its thousands of dollars, and they don't want to pay for it. Hundreds of PANDAS families have spent their entire life savings on their child's medical care, including us. I spent my entire family inheritance over the past 6 years. We lost our home. Literally every penny I ever have is spent on simple life basics, and medical care. I have not had a vacation in 5 years, or seen my family on the east coast, or bought a single thing for my house. And I am one of many PANDAS families that get divorced, because the stress of this illness is so intense and so isolating, it breaks people down.
We are back in the position to have to raise some money for my son's immunoglobulin treatment, but we are very close. The treatment in total is approximately $8500, and we have more than half of it already. WE ARE SO CLOSE!!
so once again I will hope and pray and reach out to whomever cares, whoever may have a few extra dollars that they were maybe going to give away anyway, to some worthy cause, this holiday season.
My son Lance's life is an extremely worthy cause. I can tell you a whole bunch of great things about him and how extraordinary and deep and loving and giving and brilliant he is, but its not about any of that. Its simply that he is a person. He could be anybody's child, and he deserves - as we all do - to receive medical care that will give him a chance to live a full life, regardless of what the insurance conglomerates believe about whether the treatment is worth paying for. The National Institutes of Health say it is; Stanford Children's Hospital says it is. The dozen or so PANDAS "experts" in the US say it is. The hundreds of PANDAS children who have had these treatments, and their parents, say it is.
Please forward this blog to anyone that you know that might care about something like this and give even just a few dollars to my child's life. Thank you so very much for reading our blog.
