Into the Light

by Jaime Heizler Tan

For years, I have been challenged with trying to find the words worthy of expressing the heartache of what PANDAS has stolen from us. Perhaps it is the struggle of finding words adequate to describe our lives living with pandas or my reluctance to write it down and breathe life into an illness that has already taken so much. However, in response to the disbelief many doctors express, I decided to try to shed some light on what families that battle PANDAS everyday go though. I use the word battle since pandas is like a war we fight. It is a physical war. A mental war. An emotional war. It is a war we are determined to win because we have no choice. We are warrior moms, dads, grandparents, aunts and uncles seeking help for the most important people in our lives- our children. We search and scour the internet and medical journals, spend endless amount of money and share our stories to advocate for our children. I assure you if any doctors who doubt the legitimacy of this illness would spend a week living with a PANDAS family, any doubts would dissipate. Instead, they would see families being ripped apart by an invisible illness that has stolen their child. 

At age 5, we saw her light dim. My once bright eyed, happy go lucky girl started to shy away from social interactions and cling to me. No matter how hard we tried to rekindle the light, it continued to fade. Nothing broke my heart more than watching my amazing beautiful daughter struggle with anxiety at the age of 5. It began with her standing beside me at the computer begging me to look up ways to get bad thoughts out of her mind. It was mild at first but with each exposure to strep, the flares would worsen. There were many times I would take her to the doctor and beg for a strep test without any physical symptoms. Doctors at first would look at me like I was crazy. Until of course, the culture would come back positive. I would like to think we have slowly educated some inexperienced doctors to look further than just a sore throat. 

In fact, what's amazing is that my daughter is the healthiest "sick" kid. She never gets physically sick. All symptoms are either behavioral or neurological, which makes perfect sense since by definition pandas is considered a misdirected immune response. Her body reacts by attacking the brain. 

As the years progressed, we found that anxiety was the least of our worries. Intrusive thoughts invaded my daughter's brain. She would cry every night for fear that she wouldn't wake up in the morning. When she was 9, my daughter handed me a note that said "I love you". When I looked at her she was crying. She told me she wanted me to know that she loved me, even though her brain was telling her to pick up the scissor and stab me. Her thoughts were terrifying to her. These thoughts were holding her prisoner. My innocent, sensitive and wonderful child was afraid she was going to hurt me. I can't imagine how exhausted and frightened she was battling these demons day and night. 

Luckily, we had doctors that ran blood tests and found infections triggering her. Within one week of starting antibiotics, all thoughts of hurting me were gone. 

At 9 years old, she developed an intense fear of throwing up. She restricted her food intake and lost so much weight we were considering hospitalization. My already frail child was wasting away in front of my eyes because she thought food was either poison or would make her sick. Our PANDAS specialist gave us an IV steroid burst and antibiotics. Luckily, within a few weeks she was able to reintroduce foods into her diet again and regain some weight. 

I can continue giving testimonies about how our doctors have proven that my daughters neuropsychiatric symptoms have resolved with antibiotics. We have been in this war with PANDAS for over 6 years. It is a war we are going to win because my daughter is worth fighting for. My mission is for ALL doctors to see how our children are worth fighting for.

I cannot stress the importance of having doctors on our side. On our children's side. We need doctors that are willing to help us turn the light back on in our kids. Don't keep them in the dark.

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