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 “to 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. My 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, at age 11 diagnosed with Autism. 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 then a grueling battle I wouldn’t wish on my worst enemy. She gave me the ONE doctor is the state Connecticut that she trusted.
When I found that Immunologist/Allergist doctor 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 full recovery.
My sweet boy had become a kid that 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 tic born infections to treat. It screws into the blood cells and can lay dormant. A typical CDC regulated Lyme treatment of thirty days of antibiotics wouldn’t even begin the die off phase for this, never mind kill it. In fact, thirty 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, eight at night. Six of which are 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 doctors 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 swelling in his brain), erratic behaviors, screaming for hours, and ending in me laying across him for safety.
I am often sobbing. My other two kids often sobbing. My husband an emotional mess. We were all at a loss daily- not for a week but for years.
Two years of antibiotics and about 10k later, he was better. TWO YEARS !!!!! Before tests showed Bartonella undetected. My son was back to his “normal” personality. His minor melt downs 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 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 that don’t have the resources? What are happening to them?
I am so happy the governor of my state recognizes this day today as awareness. However, when the CDC refuses to recognize – 99.9% of the medical community refuse to go against them. This is keeping people sick, and not getting access to care they deserve. Insurance won’t pay, so God for bid you have no savings.
When you wonder why suicide rates are on the uptick, more restraining is happening in schools, psychotropic meds aren’t working quite right nor is talk therapy, and no behavior plan can help a a swelling brain on fire – remember this post.
PANDAS is induced by streptococcus. PANS by Lyme and co infections. BOTH can make kids look absolutely out of their mind crazy – 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 that 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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