I broke both of my arms last Spring and was unable to do anything for myself, my family or my home for several weeks. I was a little out of it from the pain medicine, and completely forgot to pay Connor’s insurance policy. Connor was attending a school for kids on the Autism spectrum that cost over $4,000 a month. We only paid a portion of the monthly fee because his health insurance paid for the rest of it. Connor was on a Cobra policy, and was immediately dropped from the policy when they didn’t receive payment. I was devastated! I began crying out to the Lord for help, and praying for wisdom as to what to do with Connor.
It was during this time that we took him to see a Functional Neurologist in Dallas in July 2015. He diagnosed Connor with PANDAS, which, according to the PANDAS network:
“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.”
Connor was also diagnosed with Autoimmune Encephalitis. The Autoimmune Encephalitis Alliance defines it as “a rare and serious condition in which the immune system attacks the brain, resulting in impaired brain function.”
The part brain of Connor’s brain that was affected is the part that controls his motor function. His gross motor, fine motor, speech and language were all affected. We also learned that Connor had about nine different eye conditions. He couldn’t focus, his eyes weren’t equally yoked, and he couldn’t visually track just to name a few problems.
The most heartbreaking part of all of this is that he had been living with all of this for 15 years! He did not get diagnosed until the age of 16. After years of going to doctor after doctor, Connor was misdiagnosed with PDD-NOS, an Autism spectrum disorder. We are so thankful for the brilliant doctor who finally correctly diagnosed Connor and we began treatment shortly there after.
Connor began weekly IVIG treatments. According to Medscape, “Immune globulin products from human plasma were first used in 1952 to treat immune deficiency. Intravenous immunoglobulin (IVIG) contains the pooled immunoglobulin G (IgG) immunoglobulins from the plasma of approximately a thousand or more blood donors. Initially, immune globulin products were administered by intramuscular injection.”
IVIG is a miraculous drug! Connor received weekly home infusions and we started to notice a difference in Connor almost immediately. IVIG is a very expensive drug, to the tune of almost $6,000 a month and it is not covered by insurance. For Connor’s condition it is considered to be an experimental treatment.
After six months of treatment, Connor had his last treatment on Mother’s Day 2016. He has to be off the medicine for 8 weeks, before he can be re-tested to see if the antibody is still present in his brain. In the interim, Connor is in Speech Therapy, Occupational Therapy, Physical Therapy, Vision Therapy, swimming and golf lessons.
Connor is a completely different person then he was a year ago. We are so thankful for the accurate diagnosis and treatment that he has received. Please continue to pray for our sweet little man and that Connor’s brain would be completely healed. To God be the glory!
“Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us!” -Ephesians 3:20