Stories

 

JUNE 5, 2018 - MATTHEW STROMER

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I had never experienced such pain...

My 13 year-old son has an autoimmune disorder called PANDAS, which causes debilitating psychiatric symptoms. At the risk of sounding dramatic, I am not sure how we survived the past 5 years. At times, his symptoms were so severe he could not move from one room of the house to another. Every waking moment for him was controlled by intrusive thoughts and compulsions. One of his compulsions was to change his clothes and open the front door. One night last winter, this went on from 7:30 pm to 7:30 am. My wife walked with him around the block and back into the house for 12 hours, as he repeated this compulsion. To watch your child suffer like this is indescribable. We were physically and emotionally drained for years. We also felt that the healthcare system had failed him. We were sent away from the ER on many occasions, being told that he did not meet the criteria for hospitalization.

L was on many antibiotics and has had a number of both high and low dose IVIGs. The low dose is the one that seemed to work the best and has brought us to where we are today. Much, much better. Miracles happen.

As a parent, it affected me greatly. I was not prepared for this fight and it scared the hell out of me. In my life up until the point my son was exhibiting the worst of his illness, I had never truly experienced such pain, fear and hopelessness. If it hadn't been for my wife who discovered this and never gave up on him, I may never have found the strength to keep going, and that makes me feel ashamed. As an artist, it both stalled my work and also helped make it more real when I dealt with themes of sadness and depression. But through my work I was able to make a connection with my son as he is a big fan and contributor to my NOT IN FOCUS web series. And through some of the some of the worst of times he was going through, he always seemed to perk up and get excited when he knew I was putting a new episode together, which he still helps me with to this day.

The symptoms of this illness are so bizarre, they are hard to comprehend unless you live through them. What most people don't understand is how few doctors in this country treat this illness. When people would see the severity of our son's symptoms, it sometimes felt that they were wondering why we weren't doing anything. The thing is we were doing everything we could. That being said, we received much support.

My dreams for the future? For my son to continue to get better and better, which he has by leaps and bounds compared to where we were just a year ago. A night and day difference. Everything else is secondary to that.

(Previously published full article in the digital magazine, The Streets, by Meredith Howard)

Find Matthew's photos and videos at www.hipbattersea.com.

May 25, 2018 -Lisa Swint

Parents of Struggling Kids, I believe you

 

A few months ago I wrote a blog post about my daughter’s struggle with Pediatric Autoimmune Disorder Associated with Strep (PANDAS) and PANS (Pediatric Acute-onset Neuropsychiatric Disorder). With PANDAS, the brain becomes inflamed by a misdirected autoimmune response to a strep infection. PANS includes a broader set of environmental and infectious triggers with the same result: a debilitating and frightening autoimmune encephalitic-type reaction. Both disorders are defined by alarming symptoms like obsessions/compulsions, severe anxiety, tics, food restrictions, aggression, separation anxiety, mood changes, and developmental regression, to name just a few of the horrors.    

My post was picked up and republished by Scary Mommy and shared, liked, and commented on thousands of times. There was, and is, both sadness and comfort in knowing so many kids and parents suffer the same way as my daughter. I was thrilled by the awareness my post brought to PANDAS, and I addressed countless questions and concerns from anxious parents. Like me, these parents have fought hard for years to receive the right diagnosis and find effective treatment. Like my daughter, these kids have endured terrible, life-altering psychiatric symptoms.

And then came an irresponsible episode of the hospital melodrama Chicago Med.

During the episode, which aired on April 24, 2018, a boy with a stomach ache was admitted to the ER. When asked if the child had any other medical conditions, the mom confidently replied that he was being treated for PANDAS by a local doctor. Later, in a scene outside the exam room, the ER doctor began a diatribe about PANDAS being essentially a phony diagnosis and the doctor treating the boy’s disorder being effectively a quack. The ER doc went on to accuse the parents of “doctor shopping” for a physician to give them the PANDAS diagnosis because they couldn’t accept that their child had a genetic neurological condition. To make things even worse, the standard treatments, long-term antibiotics, and IVIG were referred to respectively as potentially fatal and a placebo.

As you might imagine, thousands of PANDAS parents were shocked and dismayed by the show’s portrayal of this nightmare disorder. In one fell swoop, a TV show dismissed our kids’ struggles, deemed our concerns unfounded, and labeled standard treatments as both dangerous and bogus.

I’ll be the first to admit the medical community doesn’t have this disorder completely figured out. I will also readily point out that autism spectrum disorder (ASD), attention deficit disorder/attention deficit hyperactivity disorder (ADD/ADHD), sensory processing disorder (SPD), dyslexia, and learning and developmental delays are also not wholly understood.

 

 

Is there anything worse than being a mother to a suffering child? I’d say yes. Having an ill child and not being believed by friends, family and physicians further magnifies the pain.

Moms of struggling kids:

I believe you when you say there is something wrong with your child but you don’t know what it is.

I believe you when you say you have tried everything to make things better and nothing is working.

I believe your struggle to find a doctor who doesn’t diminish your concerns.

I believe you when you say your child has changed, that he/she is somehow different.

 

I don’t think your child has behavior problems and needs more discipline just because:

He can’t wear certain shoes because they feel funny.

She refuses to speak to anyone but family because her anxiety is so severe.

He can’t concentrate on his schoolwork.

She falls apart when she’s not with you.

He has dramatic reactions to changes in routine.

She flaps her arms, rocks repetitively, demonstrates verbal tics, or has obsessive thoughts.

He doesn’t interact with people like everyone else.

She won’t look me in the eye.

It is not your parenting. I repeat: It is not your parenting. I believe you.

I won’t question your child’s behavior or yours. Why would I? How would it serve me to doubt you? Am I supposed to feel better because of your anguish? Will judging you somehow make me immune to the same problems?

Parenting a different child can feel awfully lonely at times. Please know that you are never alone in your fight and your triumphs. Please know that you are doing your very best for your child. Please ignore the naysayers, doubters, and critics. Find the believers.

I believe you. You are not alone.

 

 

 (Originally posted in Alamo Mom's blog)