Aidan Gilchrist
Aidan Gilchrist is your typical 6-year-old boy. He loves playing outside, riding his bike and living on-the-go. His parents and teachers describe him as happy, joyous and polite, always complimenting people and living an almost carefree life. He is a first grader in the North Penn School District.
However, earlier this year, his health took a turn for the worst. On March 15, Aidan fell ill, and the illness led to a febrile seizure and then developed an ear infection in his right ear and an upper respiratory infection. After receiving antibiotics, he was back to his normal self and went back to school after Easter.
He then came home with conjunctivitis, most commonly known as pinkeye, in both eyes. He was treated with drops. The next day, the energetic kid woke up an entirely different person. On April 13, he began showing symptoms of Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS).
The Symptoms
A few of the symptoms that arose were motor tics, joint pain, headaches, hallucinations, rage/aggression, and regression with math and writing skills. Some kids develop attention deficit hyperactivity disorder (ADHD) and depression, while others do not. Aidan developed tics that would disrupt activities he enjoyed and he developed uncontrollable spitting that has no apparent cause.
“OCD, anxiety, and urinary frequency/night time bed wetting are major symptoms of this disorder,” said Leah Gilchrist, Aidan’s mother. “Kids’ symptoms vary and some are worse than others and some are just slightly affected. You can’t really compare the kids affected by this.”
“He went from that carefree, happy-go-lucky, loving, caring kid to walking on eggshells around him and depressed,” said Shayne Gilchrist, Aidan’s father.
A Not-So-Simple Diagnostic Process
The diagnostic process was not a simple one. Aidan had gone to Children’s Hospital of Philadelphia (CHOP) for a follow-up for the febrile seizure, and he was showing the tics that had developed. He was initially diagnosed with Transient Tic Disorder. However, Leah knew in her gut that this was not right since the tics were sudden, whereas they usually develop over time.
After seeing multiple doctors and specialists, the family found a specialist in Pittsburgh that was able to diagnose Aidan with PANDAS on June 5, 2018. The disorder is an autoimmune disorder where the body produces antibodies to fight strep and other viruses, but the immune system is always reacting wrong and attacks the antibodies.
Although the disease is not uncommon— one in 200 kids are affected—many kids are not diagnosed as the symptoms mimic other illnesses. There has been an increased awareness of the disease in recent years.
The Problem of Insurance
Unfortunately, the diagnosis only goes so far. Although the disease was discovered 20 years ago, there is no official medical code, so treatment is not covered by insurance. Many times, doctors try to push patients with PANDAS/PANS symptoms towards psychiatric medicine, but these treatments can make the symptoms worse, as they do not treat the underlying problem.
“We have insurance for a reason,” said Leah. “He has a true medical problem, and people just look the other direction when they shouldn’t.”
Because the treatments are “experimental,” they need to be paid for out of pocket. Treatments can cost anywhere from $12,000 to $120,000 for one treatment, which can put a financial strain on any family, but especially on a single-income family such as the Gilchrist’s.
“It’s $600 a [doctor’s] visit, $200 a phone call,” said Shayne, adding that these costs, plus the treatment costs, can take a toll on the family. “How do I help my child if I literally can’t make money appear?”
“We just met a woman in a support group that was going through a divorce because of everything going on,” said Leah. “If your spouse and you aren’t on the same page, there’s a huge disconnect.”
Thankfully, there are strides being made to change this. Right now, there are bills—Pennsylvania House Bill 2520 and Pennsylvania Senate Bill 1220—which are being voted on. If passed, this would lead to mandated insurance coverage for PANDAS/PANS treatments. Illinois was the first state with this kind of bill and Delaware was the second.
The Prognosis
The good news is that there are kids who do get better. Even though Aidan is not completely back to who he was before, as soon as he was put on antibiotics, his parents noticed a difference right away. Currently, he is stabilized and is not as severe as it was a few months ago, but there is a long way to go.
“The faster you notice this or you see this happening, the quicker the treatment can be,” said Leah.
For now, the family is trying various medicines to see what helps the most. So far, he has been on four different antibiotics and antivirals, but he’s still not coming back to baseline. They are still trying to peel back the layers to get to the root of what initially caused the disease to occur in Aidan.
“The problem is it’s autoimmune, so autoimmune diseases wax and wane,” said Leah. “They can come and go as they please and it could be the rest of his life.”
The Fundraiser
The Gilchrist family is taking part in the fourth annual fundraiser to benefit PANDAS Network. The event is being held on Nov. 3 from 7 p.m. to 11 p.m. It will be held at the Event Center by Cornerstone in New Hope. The event will feature a Casino Royale theme with live entertainment by The Donuts and Brian Seymour. There will also be food, raffles and table games.
Tickets are on sale now. The early bird ticket price is $55 per person and includes $25 in Pandas Bucks that can be cashed in for chips, food, beverages, and entertainment. The price will increase to $70 per person on Oct. 17.
“Last year, they raised $39,000 and all of it went to Columbia University,” said Shayne. “They used it for research and the research took them very close to what they think is finding a bio-marker. If you find a bio-marker, it becomes almost impossible to prevent health coverage.”
“It silences the naysayers,” added Leah.
See also:
Towamencin Cat Identified, Returned Following 10 Month Adventure
All-Day Kindergarten Motion Passed by North Penn School Board
West Main Consignment Collecting Clothes for A Global Cause
Community Rallies to Aid Local Family in Need
