A Mother’s Very Personal Story Of A Family Living With PANDAS

 

Photographer Lorena Turner is the Edge of Humanity Magazine contributor of this intimate documentary.   To see Lorena’s body of work click on any photograph.

 

 

My son was born around 5pm after a long and very difficult labor. The TV in the hospital room paralleled his birth with coverage of the rescue effort of miners in the Crandall Canyon Mine in Utah. “Like the miners”, I thought, “this baby is burdened by his own physicality.” There was a desire to surface, but a kind of reluctance to do so. When he finally emerged, I kept my eyes glued to the TV, completely unenthusiastic about my new son. “Let her kiss him,” I heard the midwife say. A nurse dutifully brought my son to me, I looked at the little scrunched up face that seemed so pained to be there, kissed his head and turned back to the TV.

 

"I checked in with myself to see if I loved him. I did not. I didn't recognize him even."

 

“She’s in shock,” she said as my son was put on the scale next to the bed. We brought him to our apartment a couple of days later, and put him on the table still in his car seat. His head seemed extraordinarily tiny and listed to one side in the carrier. I studied his face, his shape, the texture and color of his skin. Was he actually – as the nurse told me at the hospital – perfect? This seemed unlikely. I checked in with myself to see if I loved him. I did not. I didn’t recognize him even. I found relief in the idea that I could still walk out of the apartment at that moment and not feel a thing. Our experience with his PANDAS find me reliving that ambivalence on a regular basis now.

 

 

"What happens to the infection? Can it cause some kind of damage?" 

 

We went over our son’s medical history with three separate doctors in the last month. In the last two years he’s been to the pediatrician ten times with similar symptoms – sore throat, a fever, and sometimes stomach pains and hives on his torso. When it was all laid out in front of me, it was clear that something was wrong. I thought he was having repeated strep infections, but most of the time the tests were came back as negative. I even asked our pediatrician on our fifth visit in as many months, “What happens to the infection? Can it cause some kind of damage?” She just said the body takes care of it and there was nothing we could do. That would have been the perfect moment to tell me that there was such a thing as PANDAS, and that it was a possibility. Instead I had to read about it through a posting made by an acquaintance from high school on Facebook.

 

"Sometimes I stand far away from my son in public and think about how we could be strangers at some point in our lives."

 

One day my son went to sleep, and when he woke up he repeatedly told me to punch him while shaping my hand into a fist then moving it towards his face. The experience of PANDAS is challenging in a way that I never knew possible. It has forced me think about the direction and choices I’ve made in my life. The questions that this situation has brought up for me happened almost as quickly. Will I be able to continue with my life as I had planned? Will I be able to continue to learn and grow through new experiences and relationships? All of this seems very uncertain now. Sometimes I stand far away from my son in public and think about how we could be strangers at some point in our lives.

 

 

My husband and I met for the first time on the corner of 6th Ave and W4th St in the West Village in New York City. It was the end of the summer, two days before my birthday in fact, and I was to leave shortly to return to Los Angeles for the school year. He was dressed up and walked quickly towards me when we first saw each other. I heard a voice in my head say, “That’s him!” Later I knew it as my son’s, and that he recognized his father through my eyes. Asher came less than a year later. In light of his diagnosis and the havoc that it has wreaked so far, I find myself thinking that there must be a destiny to our convergence.

 

"Dysgraphia, compromised handwriting, is often coupled with dyslexia, we were told, so is ADHD."

 

I was cleaning up from the school year and found a passage written by our son earlier in the school year. I noticed last November that he wasn’t processing information in school well, so I had him tested for dyslexia. Dysgraphia, compromised handwriting, is often coupled with dyslexia, we were told, so is ADHD. We learned many months later that all of this, including his declining math comprehension, were indications of the encephalitis created from PANDAS.

 

 

PANDAS kids often have multiple infections that their immune system is trying to manage all at the same time. They are infections that people with more fully developed and robust immunity can manage and work through. Some practitioners consider it a “modern disease” specific to developed cultures because of the quality of food and lifestyle choices that contemporary kids have – processed foods, foods with low nutritional content, little fat and fiber – are part of what created the gut flora imbalance that is at the heart of correcting the problem. We have always discussed reading labels and about how advertising works, but now our talks are more pitched with urgency. I was completely dreading dragging my son into this part of what I saw as “adult life”, but he’s been open to it and, with a few exceptions, has been good at embracing these discussions and the needed changes.

 

"I can't say that I have loved every moment of the journey of parenting, but I love the person who is at the center of it. "

 

Our son turned ten two months ago. I found a picture of myself when I was pregnant with him. The last ten years have been a mix of extremes – incredible highs and perplexing, anxiety ridden lows. I can’t say that I have loved every moment of the journey of parenting, but I love the person who is at the center of it. Intensely. I just wish I had known that a thing like PANDAS was possible, as there are so many decisions I would have made differently.

 

 

"In my own family, there are days when there is a lot anger between us, the three of us. "

 

I have learned a lot from reading about other families and their experiences diagnosing and treating PANDAS in their kids – marriages collapse due to differing perspectives, differing narratives on illness, families run out of money treating their kids, and caretakers grow resentful. In my own family, there are days when there is a lot anger between us, the three of us. When our son has a flare up of symptoms he’s angry, and my husband and I are angry at the situation we find ourselves in, and often this erodes the way we communicate with each other. I’ve also learned that joy can be fleeting and that the moments when your kid is whole and happy and seems to resemble their ‘old self’, should never be taken for granted.

 

 

"What happens when I go to sleep? Where do I go?" 

 

Every kid has different symptoms of PANDAS, in our son’s case, he has long emotional episodes where he’s fixated on one idea for three to four hours. Today he was upset about having to get his tonsils out, something that would reduce his exposure to various bacteria that may be wreaking havoc with his immune system, but when you’re nine, that’s hard to understand. It took most of the day to get our son to talk about why he’s scared about having his tonsils removed.

Late in the afternoon he finally asked me, “What happens when I go to sleep? Where do I go?” Such an interesting question. This opened the door to a conversation about the nature of consciousness.

 

 

 

Thursday nights are spent by me assorting and assembling various potions into little boxes, the contents of which will be distributed to my son four times a day throughout the following week.

 

 

PANDAS is like an odorless, tasteless, invisible gas. As a parent, you can tell something is just not right about your child, but you can’t put your finger in exactly what it is. A child with PANDAS can feel just fine – no headache, stomachache, fever, pain, etc., but he/she can express a succession of emotions in a short period of time, or refuse to eat or drink, or not want to go to sleep, or have hyper focus on one idea or body part, or do poorly in math and have terrible handwriting. (All of these are its symptoms.) It’s very difficult to say to someone, “You’re sick, because these are the things I see you do, and those things I perceive as not ‘normal’.” My son once asked me, “Why don’t some people who are sick try to get better?” I didn’t try to explain this idea of illness and perception, or even that someone can feel fine but still fit the description of illness. I just said that some people are scared to look into why they feel as they do, and left it at that.

 

See also:

New America

By Lorena Turner

 

 

 

%d bloggers like this: