Lucy, Steven, Ellie and Lilly Randall are the sweetest people you'll meet. I met Lucy and Steven when they took our wedding pictures almost three years ago. This family is God loving and will do anything for anyone. When you visit Lucy's blog you will see just how talented and creative this entire family truly is. But lately Lucy's blogs have consisted of something that no parent should ever go through!!!
Ellie, their youngest daughter has been dealing with what they thought was severe ADHD and ADD, but after a couple years of pure HELL she's been diagnosed with PANDAS. What the heck is PANDAS? “PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) occurs when strep triggers a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more. PANDAS Network estimates that PANDAS/PANS affects as many as 1 in 200 children. PANDAS has an encephalitic-like onset. Some children's’ onsets are clearly debilitating and they become near catatonic and homebound. Other children can function at school and then fall apart at home for hours on end. BUT IT IS CLEAR – THE FORMERLY NORMALLY FUNCTIONING CHILD IS GONE. PANDAS symptoms may have flared in a lesser manner for weeks or years prior to the acute onset but often readily disappeared or lessened over time. If untreated with antibiotics generally we have seen a myriad of other symptoms will intensify in the weeks and months post-acute onset. If the severe symptoms do not stop and persist over many months, permanent cognitive damage can occur. PANDAS children may have moderate to dramatic improvement with antibiotics within one week of treatment, however, further interventions may be needed. How to stop the entire syndrome is still debated, but many parents and doctors report prolonged antibiotics (two months to one year) and/or IVIG (intravenous immunoglobulin) treatment or plasmapheresis. (This is quoted from the PANDAS network website. To learn more about this disease of hell, click here to go to the link
My Kid is Not Crazy documentary trailer from Tim Sorel on Vimeo.
Ellie's treatment is anywhere from $12,000-$15,000 (NOT COVERED BY INSURANCE!!!!) assuming she only needs one round (lets pray that is the case). This doesn't include everything they've been through in the last couple of years, the countless doctor visits, medications and treatments she has already received. They are now being told that their other daughter Lilly will have to undergo some testing to make sure she doesn't have early signs of PANDAS. This family is going through something that none of us understand and hopefully never will. Please help me raise money to ease some of the stress they are taking on. If you want to read updates on the latest you can read her blog, www.lifewithlucyblog.com
Oshri and Garrett Comartos