Cure for Aaron

Aaron is our very special 14-year-old boy. We love him dearly. Aaron was diagnosed with autism at the age of 2. He lost his speech, stopped playing with toys and stopped turning to us when we called his name among other symptoms. We have always questioned the autism diagnosis, never believing that autism just appeared without an underlying root cause. In fact, we’ve searched for 12 years to find out why Aaron has “autism.” But it wasn’t until 2017 when Aaron became acutely ill that the pieces started coming together. And, it is just recently that we had to put everything on hold to get Aaron to a specialist because he was losing an immune battle that has apparently been raging in his body. We recently found out that Aaron has Autoimmune Encephalitisor AE, and he will not have a chance at recovery without this medicine called Rituximab. If we don’t get him the treatment his autoimmune system will continue to deteriorate. It starts with two separate treatments and they cost $16,000 each. It also requires us taking him to Washington, DC for each infusion. So now that we know the treatment, it is unbelievable that we cannot fund it ourselves, even with insurance. We need your help! Thank you in advance for reading about our beloved Aaron.    

In 2017, at age 12, Aaron began experiencing extreme behaviors including terrible bouts of obsessive-compulsive disorder (OCD), food avoidance and loss of appetite. Aaron lost about 12 pounds in a short period of time. He was already on a gluten-free/casein-free diet, so his food choices were limited anyway. He also had rashes on his body and upper back. He developed multiple tics such as lip flapping, head shaking, arm jerking and others. His OCD was out of control and we could not redirect him. We look back at that time and we say that is when our Aaron fell off a cliff!

Associated with the extremely difficult behaviors were bouts of fever, an upper respiratory infection and strep infection. Fortunately, his doctor recognized that these behaviors could be due to his recent strep illness. His doctor mentioned that Aaron may have PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and that we should do blood studies. After multiple labs and other studies, Aaron was indeed diagnosed with PANS/PANDAS and Lyme disease. Aaron was started on antibiotics, antivirals and antifungals. We watched him slowly get better, but he never got back to his previous baseline as he was before the strep illness. After a while we learned that Aaron had a new baseline of behaviors. We knew he was not healed, but at least he could function with a lot of accommodations for his OCD behavior.

In early 2018, Aaron fell completely off the cliff again. This time we had to remove him from school. He was very sick; the OCD was raging and he could not function. He would not eat. He would not leave his clothes on, he was incontinent and we were unable to redirect him. Aaron’s OCD at this point was just unbelievable.  He cycled compulsively through our house looking through every closet in every room. He went downstairs to the basement then back upstairs and back through every closet in every room over and over and over! We could not take our eyes off him and he could not go anywhere because everything that he saw became an object of his obsessive need to change, move or organize over and over again. We returned to his doctor and she changed his antibiotics, antivirals and antifungals, but his labs simply did not show good rebound. His doctor then recommended that we take Aaron to see a PANS/PANDAS specialist, Dr. Beth Latimer, a pediatric neurologist in Georgetown, Washington, DC. We did our research and found that Dr. Latimer is one of the world’s leading specialists on PANS/PANDAS. Dr. Latimer has successfully treated over two thousand children like Aaron.

After significant planning, we took Aaron to see Dr. Latimer in February 2019. Dr. Latimer diagnosed Aaron with Autoimmune Encephalitis or (AE). Aaron’s AE is triggered by infections such as strep, Epstein-Barr, Mycoplasma pneumoniae and common viral herpes that would otherwise run their course and be done. But instead, these bacteria and viruses cause his immune system to be inflamed.  So instead of Aaron’s immune system working to kill the strep or other bacteria or viruses, his immune system is caught up in a never-ending battle that his body simply cannot and will not win if left untreated. The treatment is IV infusion Rituximab which is an immune modulating therapy. Aaron’s lack of immunity has caused brain inflammation, but after Rituximab he will likely be able to speak again. His body will be able to eradicate illnesses that it could not before. Aaron’s cognition should dramatically improve and he will feel so much better. But again, we cannot do this without financial help. With a lot of encouragement from friends we reluctantly created this page. It is not for us, it is for Aaron. We are grateful for any help for Aaron. Every dime will go to treatment to reset his immune system.

Thank you for your prayers, love and support.
Beth & Buddy Runion and Family