My Son Was Diagnosed With PANS From A Tick-Borne Infection

by Aimee Dos Santos
Originally Published: 
Courtesy of Aimee Dos Santos

I remember the day I broke. I was laying on the ground restraining my son. It had followed by my day at school doing three restraints on other people’s children. I had become marked as everyone’s emotional regulation savior, but who would save me?

Years led up to this moment. Years of being let down by some of the best doctors and the smartest people I know. Years of not knowing my own son and watching him deteriorate to someone I couldn’t help.

As a social worker for two decades, I pride myself on knowing most of what there is to know about mental health. Usually, when a case is presented to me, I can figure out the diagnosis, the need, and make a treatment plan in no time.

I had already spent a decade prior to this fighting for this kid. He was high functioning autistic, yet nobody wanted to formally give him the diagnosis because he was “too social.” Yet when things started to go differently, and he started to perplex us all, everyone wanted to sum it up to it being “just autism.”

A mother knows when something is different and missing the mark. As things got worse, I became more desperate. The school nurses at my job mentioned something they just had learned at a professional development called PANDAS/PANS. They said I should check it out.

I asked the neurologist, the pediatrician, the psychiatrist, and any and all other doctors we came across for months. All of whom, although very kind and capable people, told me it wasn’t really a thing and is rare.

My son was finally diagnosed with autism at age 11. This should have been a relief, yet it was covered by this storm. He was progressively getting worse, not better, even on psychotropic medications.

Lucky for me, my boss knew someone that had a child formally diagnosed with PANDAS/PANS. This amazing, beautiful mother came into my office one day and schooled me on what I was in for. It was no less than a grueling battle I wouldn’t wish on my worst enemy. She gave me the name of the ONE doctor in the state of Connecticut that she trusted.

When I found that doctor, an immunologist/allergist, I felt instant relief. He took one look at my kid and said, “This is not autism, this is PANS, caused from a co-infection from Lyme.” He listened to all of the history, he knew exactly what it was — and even better, how to treat it. However, it would be a long road until my son would make a full recovery.

My sweet boy had become a kid who looked possessed. I had no idea until I met with this doctor that his brain was swelling. The infection he had in it, called Bartonella, was the the worst of all the tick-borne infections to treat. It screws into the blood cells and can lay dormant. A typical CD-regulated Lyme treatment of 30 days of antibiotics wouldn’t even begin to reach the die off phase for this, never mind kill it. In fact, 30 days of antibiotics for anything Lyme-related usually doesn’t. Bartonella is the best imitator of psychosis, and can make anyone with it look like the only answer is hospitalization.

My sweet boy was desperate to get better. In between his brain flares that often resulted in suicidal and homicidal behaviors, he would beg me to help him. He was taking eight pills in the morning and eight more at night, six of which were hard core antibiotics.

I couldn’t tell anyone when he was in crisis. Our kids can’t be treated in the ER or in psych wards properly, because the CDC refuses to actually recognize it as the epidemic that is. Instead, doctors are urged to treat it with psychotropic medications only. This often makes kids with PANS actually worse! There was no safe place to treat my son in the medical community except for one doctor’s office. Which seems absurd, seeing as I live in the state that Lyme disease was named after.

So when my child was at risk, people knowing could put our family at risk. It could’ve been assumed that it was medical neglect. I could not risk it. So we suffered alone. Most often it looked like a dose of Motrin (to stop the swelling in his brain), erratic behaviors, screaming for hours, and ending in me laying across him for safety.

I was often sobbing. My other two kids were often sobbing. My husband was an emotional mess. We were all at a loss daily — not for a week, but for years.

Two years of antibiotics and about ten thousand dollars later, he was better. Two years before tests showed Bartonella undetected. My son was back to his “normal” personality. His minor meltdowns were more related to autism and less to brain flare.

Here is the thing that enrages me: I am in the mental health profession and I had a hard time navigating getting the right diagnosis and treatment. It took me almost three years, two of which my child was virtually unrecognizable. If I hadn’t gotten the right care, he would’ve ended up institutionalized or dead. I — a seasoned social worker — could barely keep him alive! What about all of those poor babies out there who don’t have the resources? What is happening to them?

I am so happy the governor of my state recognizes this day as a day of awareness. However, when the CDC refuses to recognize, 99.9% of the medical community refuses to go against them. This is keeping people sick, and preventing them from getting access to care they deserve. Insurance won’t pay, so God forbid you have no savings.

When you wonder why suicide rates are on the uptick, why more restraining is happening in schools, why psychotropic meds aren’t working quite right, nor is talk therapy — remember this post. No behavior plan can help a a swelling brain on fire.

PANDAS is induced by streptococcus, PANS by Lyme disease and co-infections. BOTH can make kids look absolutely out of their minds — from random tics, to psychotic behavior. THEY ARE SICK. It is not something that can be replaced by a reward or medicated to be numb. They literally have an infection raging in their body.

Spread the word. Just because someone is wearing a white coat and went to medical school doesn’t mean they have all the answers. Hell, the government knows about this epidemic and refuses to do anything about it. If your gut knows there is more, there probably is. Find someone who is PANDAS/PANS knowledgeable. Get the help your child needs.

And above all, remember you aren’t alone. Ever. Not even on those worst days.

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