Help Justin Overcome PANDAS/PANS

Resources:
http://pandasnetwork.org

Here are some short videos of what life with PANDAS/PANS is like (MUST SEE): 
https://www.moleculeralabs.com/watch-20-20-and-nightline-episode-on-pandas/

In light of PANDAS Awareness Day on October 9, 2019, we would like to share with you our story.

2017. On January 10, Justin turned 16. On January 14, my mother passed away. She was two months away from her 94th birthday. She lived with us and our son, Justin, who was very close to her. Justin has autism, is low verbal and attends a special education school.

In the months that followed, Justin’s teachers and therapists began informing us that his performance in school was deteriorating. In May, during our IEP (Individualized Education Plan) meeting, we were told that Justin wasn’t meeting any of his IEP goals.

We all concluded that he might have been grieving the loss of his beloved grandmother. We also thought that his teenage hormones were getting the better of him and was the cause of his irritability.

But other issues we’ve never seen in him before, like trembling hands and obsessive compulsive behaviors, began showing up. He became fixated with the zippers of his backpack and hoodie, so we changed his backpack to a drawstring and it temporarily solved the problem. We didn’t think we could possibly change everything that he became obsessed with.

Later that year, we brought him to a neurologist to check for seizures. He underwent a sleep-deprived EEG and the result came out negative.

2018. Justin continued to struggle in school. By October of that year, his OCD became so severe and debilitating that we brought him to his alternative pediatrician who was able to help us manage his symptoms.

Around that time, we started to get incident reports from the school. In one instance, he grabbed his classmate’s sunglasses. Another time, he shoved an instructional aide. Severe OCD = aggression. His teachers and therapists were scratching their heads and wondering what was happening to him. At home, he started having separation anxiety and began having sudden fits of rage and irritability.

He became a different person - going from a sweet, mild-mannered and prayerful young man to someone who was ballistic at times and out of control. To add to the frustration, Justin is unable to communicate when he’s feeling pain or discomfort. Everyone who worked closely with him was devastated to see what was happening to him! He had regressed dramatically!

2019. In January, his alternative pediatrician ordered the Cunningham Panel, a blood test that measures the levels of auto-antibodies, which are associated with neuropsychiatric disorders. The result showed 3 out of the 5 markers were elevated, which led his alternative pediatrician to conclude that he had PANDAS.


On July 5, his teacher texted a photo of Justin wearing a pair of noise-cancelling headphones, looking very distressed. They were having pizza for lunch and to see his face all red, inflamed, looking so unhappy and uncomfortable in front of one of this favorite foods was the turning point for us. That’s when we realized we needed to step up our game and find a doctor who can cure this horrible disease.


We have a close friend who’s son also has autism and PANDAS, who’s good at research and reading up on all the latest therapies and interventions. She forwarded us a news article about this young woman who died as a result of PANDAS. It was a wake up call which strengthened our resolve to get help for Justin before his condition becomes life-threatening and he would be unable to travel to see a specialist.

That weekend, we emailed the office of Dr. M. Elizabeth Latimer in Washington, DC, one of the preeminent experts in PANDAS/PANS. With her exceptional track record of treating over 2,000 children with this disease and the prodding of our close friend, we made the leap of faith. That following Monday, we called the doctor’s office first thing and to our surprise, were told that there was an opening on August 27, which was in itself a miracle We didn’t think twice about making the appointment and in the next 2 hours, we booked our flight to DC. The timing couldn’t have been better since we didn’t have plans to go anywhere last summer as a result of Justin’s challenging condition and unpredictable behavior.

Our decision to see Dr. Latimer paid off immediately! She confirmed that Justin had a strep infection at some point, which was undetected and/or thought to be a common cold or flu. The strep never left his body and mimicked his brain cells, causing his own immune system to produce antibodies that are also attacking his healthy brain tissue. The result was inflammation of the brain (autoimmune encephalitis) and an abrupt onset of debilitating neurological symptoms. This diagnosis is an absolute nightmare since mainstream medicine is still largely late to the party on this condition and treatments are still not covered by health insurance.

He was prescribed antibiotics and just one week after school started, we requested an emergency meeting with his teachers and therapists. Everyone agreed that they started to see some positive changes in Justin’s behavior!

The week that followed, we had a phone conference with Dr. Latimer to discuss the next step in Justin’s treatment - she recommended 2 infusions of rituxan, 14 days apart. Rituxan is an expensive specialty drug used to treat conditions like non-Hodgkin’s lymphoma. The cost for both infusions is $32,000!

This was a turning point in our lives because we felt like we can see the light at the end of the tunnel. There was no waiting until next year. We had to ride this momentum and decided to move forward with this procedure because of the remarkable improvement we’ve seen with the first line of treatment.

Our family will be flying back to Washington, DC on the 15th for the first infusion and on the 26th for the second one. This costly procedure will reset his immune system by shutting down his body’s production of antibodies, thereby halting the abnormal PANDAS/PANS cycle of episodic physical and neuropsychiatric symptoms.

Justin needs your prayers and support at this time. We hope you can help us help him and alleviate his pain and suffering. This gofundme campaign will pay for his rituxan infusions, which are not covered by insurance and have to be paid entirely out of pocket. 

With gratitude and appreciation,
Belina, Alex & Justin