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Aidan's Story 

April 1, 2022

 

RE: PANS/PANDAS Insurance Coverage Legislation 

My beautiful son Aidan was a healthy and vibrant 8-year-old when he became ill with pneumonia eight years ago. My loving and playful son woke up a completely different child after an ordinary childhood infection. Almost overnight, Aidan had disappeared into darkness. My small eight-year son was completely consumed by anxiety and OCD rituals, hallucinations, ticks, and extreme separation anxiety. Aidan could not leave the house or play with his friends. He raged at us and threw things at his baby brother. My husband and I were terrified. Aidan stopped sleeping. He could not concentrate or do any type of school work. What happened to my son? 

My husband and I felt relieved when we found a pediatric psychologist who specialized in Cognitive Behavioral Therapy. She quickly suspected what was happening to Aidan. She suggested that Aidan was suffering from PANDAS, a post-infectious encephalopathy and she referred us back to our pediatrician to request a strep test and throat culture, ASAP. 

I immediately called my son's pediatricians office and discussed Aidan’s suspected PANDAS diagnosis with the nurse, who then scheduled me for a one-hour appointment with Aidan’s pediatrician. We had to wait a month for that appointment. Each day that passed, Aidan deteriorated. It took me hours to prepare Aidan to leave our house on the day of our pediatric appointment. Suddenly, clothes burned Aidan’s skin. He could no longer wear shoes, they were too painful. Every strand of hair on Aidan’s head had to be perfectly straight. And once he was ready…he would scream and cry out in physical pain, while stripping off all his clothes, until he was standing before me, clothless and inconsolable. This was now our daily routine. 

         

I still remember being extremely relieved when Aidan and I finally sat down in the examining room of the pediatrician's office. I briefly discussed PANDAS with Aidan’s pediatrician. As soon as I mentioned a PANDAS diagnosis, Aidan’s pediatrician scooted back his chair and said, “I do not believe Aidan has PANDAS.” As he walked out the room, Aidan’s pediatrician wished us good luck. Our hour-long appointment was over in 2 minutes.     

After being turned away by our pediatrician, Aidan’s new psychologist referred us to a PANS/PANDAS physician who was out of Network. We were advised that he was very expensive. Appointments were $400 per hour. Labs, medication, and supplements were an additional cost. My husband and I would have paid anything to get our son back. It took an additional 3 months to be seen by a PANS/PANDAS literate doctor.

         

By this time, Aidan had become completely nonfunctional. He could not sleep, eat, or focus. He lost his short term memory and he was consumed by anxiety, OCD, Tics, and ADHD behaviors. My heartache was compounded by the fact that my son could no longer tolerate the high pitched sound of my voice…it tortured my son’s now sensitive hearing. I was forced to go mute around my son. I could not soothe my son with words or affection, as his skin had become too painful for touch.

My husband and I were eager and relieved to finally have our first appointment with a PANS/PANDAS specialist. At our first appointment Aidan was formally diagnosed. He was 9 years old. Aidan met all clinical criteria for diagnosis. Aidan was put on a course of antibiotics and within days, we had our son back. All physical and mental health symptoms were alleviated after one course of antibiotics. Over the years, Aidan’s symptoms have waxed and waned. With each new infection there is a potential for relapse. Aidan has relapsed many times over the last eight years, causing my family great emotional and financial pain. Antibiotics had been the gold standard in Aidan’s treatment, until they stopped working.

         

On Jan. 2, 2020, my family and I were on a trip when Aidan fell ill with a stomach flu. Aidan’s relapse came on quickly. OCD, ODD, ADHD, food restrictive behaviors and explosive rages returned to our home. Aidan’s condition continued to deteriorate.

         

On May 10, 2021, I had a private meeting with Aidan’s previous doctor to discuss Aidan’s deterioration. We discussed the following: Aidan had developed gray hair on his legs and scalp. Aidan had to have a mass removed from his leg and biopsied. I also reminded Aidan’s previous doctor that over the last year Aidan had severely restricted food intake. He had severe OCD, insomnia, ADHD, sensory issues, rage, mood disorders, fatigue, anxiety, muscle pain, weakness, constipation, bloating, nausea, acid reflux, and chronic asthma. Aidan had to stop running with his cross-country team and he could no longer go to school. Aidan’s life had once again become nonfunctional and I was forced to stop teaching and go on EFMLA. I had to become my son’s caretaker. After I ran through this list of symptoms with Aidan’s previous doctor, she told me that all of my sons’ symptoms were simply due to anxiety. I was sent away with a pamphlet for an anxiety and depression center. 

         

This was the second time a physician had quit Aidan while he was suffering from the effects of brain inflammation. It was another devastating moment in our PANS journey. This time I knew I had to get Aidan to a Children’s Hospital where he would receive the best possible treatment and care. Aidan began treatment with a Pediatric Gastroenterologist and Pediatric Infectious Disease Expert in May of 2021. Children’s Pediatric Rheumatology Specialist, and a child Psychologist were added to Aidan’s medical team in June, 2021. Lastly, Aidan was referred to a new pediatrician, and child psychiatrist in July of 2021.

         

All six treating physicians diagnosed or agreed with Aidan’s PANS diagnosis. Aidan’s physicians prescribed a course of IVIg. I was so relieved. I thought our anguish was finally over. Reputable doctors, from leading hospitals, were finally treating my son. Little did I know, things were about to get worse.        

Our insurance company, against the advice of all six treating physicians, denied Aidan’s coverage for life saving IVIg. Aidan’s team of physician’s all advocated for this medication but an insurance company pharmacist, who is not a doctor, who has never examined or treated our son, had the ultimate veto power. It was another devastating loss in our PANS journey. 

         

During this last year of appeals, my son’s health has continued to deteriorate. In January of 2022, Aidan was hospitalized for a gastrointestinal issue. In the hospital, Aidan received his first infusion of IVIg. It worked almost immediately. We got our son back! Aidan’s doctors were elated at Aidan’s improvement. Aidan’s rheumatologist/immunologist explained to my husband and I that Aidan would need a second infusion of IVIg in 4 weeks. We were assured that with Aidan’s excellent improvement, the insurance company would not hesitate to authorize the second treatment because..."It so clearly worked!"     

Unfortunately, my insurance company denied authorization of Aidan’s second treatment of IVIg. Our insurance company is also currently denying payment for the IVIg that was used in the hospital. Leavng my husband and I with a potential $40,000 bill.

         

Aidan’s delayed treatment has caused him to backslide. I have had to watch my son slowly slip back into darkness while knowing there is medication out there that will help him. This has been a severely traumatizing experience for my entire family. As a last resort, My husband and I have had to incorporate the help of three healthcare advocates to assist us, and Aidan’s doctors, in appealing the insurance company’s denial of coverage. I received a letter from our insurance company on 3/24/22 that IVIg has finally been approved. My son is now 16 years old. 

           

PANS/PANDAS is a debilitating illness that will suddenly take over a child and devastate a family, emotionally and financially. Currently, eleven states have passed legislation that mandate insurance coverage for children with Pediatric Acute-onset Neuropsychiatric Syndromes (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS): Arkansas, Delaware, Illinois, Indiana, Maryland, Minnesota, Massachusetts, New Hampshire, Washington, Iowa, and Oregon.

           

Our children need your help and so do our families. PANS/PANDAS children need optimal care in order for them to reach full recovery, or their illness can become a life threatening and/or chronic condition, which will impact their lives, as well as, create a financial burden on the state of California.     

It is paramount that you and your fellow legislators support and pass legislation to mandate insurance coverage for PANS/PANDAS. Allow your constituents to access insurance appropriate care when confronted with PANS/PANDAS and the medical challenges associated with it.

Respectfully,

AMR

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