Stories

 

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)