PANS/PANDAS Symptoms in My Family

If you have a child and haven’t heard of PANS/PANDAS and the symptoms associated with this devastating syndrome, it is very important that you do.  Last week, I shared the story of my then 12 year-old daughter’s battle with PANS (Pediatric Acute-onset Neuropsychiatric Syndromes).  Her sudden-onset panic, fear, terror and severe separation anxiety stopped our family’s life that summer.  We felt as though we had lost our daughter.  The joyful, fun-loving, social butterfly that we knew had been kidnapped by what we soon learned was a very common bacterial infection.  Mycoplasma or in layman’s terms, pneumonia.  You can read more about our daughter’s story here.  

Bacteria Playing Hide & Seek

Here is my attempt to explain how a bacteria such as mycoplasma, bacteria that causes pneumonia, can cause the symptoms of PANS/PANDAS such as drastic emotional or behavioral changes.

Basically, these bacteria (STREP or mycoplasma, for example), play Hide & Seek within the body.   These bacteria can actually imitate or mimic the healthy cells within the body.  They basically “hide” while pretending to be healthy body cells.  In the time that these bacteria are hiding, they multiply in secret.  They ultimately grow and grow until they are finally found once their presence can no longer be hidden from the body’s immune system.   The immune system actually attacks the healthy cells that the infections have been mimicking in secret.

Devastatingly, at that point, the child’s behaviors and emotions take a drastic turn for the worst causing frightening emotional and behavioral symptoms:

  • OCD (this can present as repetitive distressing thoughts)
  • Anxiety
  • Depression
  • Severe opposition
  • Aggression
  • Handwriting deterioration
  • Sleep disturbances
  • Obsessions about food
  • Hyperactivity and sudden ADHD-like symptoms
  • and more…

 

Adults Forced to Play

This forces parents and doctors to begin the game of Hide & Seek that they did not know they were supposed to be playing.

Adults finally seek out the cause of these severe changes in the child and then often find the bacterial culprit if the proper blood workups are performed.    Click here to access diagnostic workup information.  Please bring this with you to your doctor if you notice symptoms of PANS/PANDAS in your child.  Very often, doctors are not well-versed in the diagnostic criteria for PANS/PANDAS.  

Specifically referring to the STREP bacteria, WebMD describes it this way:

An infection causes your immune system to attack your body’s healthy cells, in this case, cells in the brain. The strep bacteria disguise themselves to look like normal cells. When the immune system eventually finds and fights them, it sometimes also fights the cells that the strep is imitating.

Journey from PANS/PANDAS Symptoms to Diagnosis

Today, I would like to share the story of a sweet friend of mine.   She has and is currently navigating this incredibly rocky road with her own son, who has the trifecta diagnosis of PANS/PANDAS/AE.

According to  Epidemicanswers.org, AE, Autoimmune encephalitis is:

Autoimmune Encephalitis

Another way to think of PANS PANDAS, as well as any neurodevelopmental disorder such as autism, ADD/ADHD, Sensory Processing Disorder and even learning disabilities, is that these disorders may fall under the larger umbrella of autoimmune encephalitis (AE).

Autoimmune encephalitis is a disorder in which the immune system attacks the brain, impairing function.

I am honored to have Heather share her story with you in the hopes that more moms are able to access the appropriate diagnosis for their children who are suffering at the hands of this life-altering and debilitating illness.

When the diagnosis doesn’t fit

Heather’s Story

It was about 3 years ago when my then 4 year old started changing. We were getting calls from preschool about behavior challenges they were having with him and thought it was best he be evaluated for social/emotional and academic delays. This came as a bit of a punch in the gut as I knew my child had been ahead before this and we always watched him so closely as we have another child on the spectrum.

So why now?

What changed?

What had I missed?

Had I been in denial for 4 years?

So we navigated through this new journey of many evaluations, Occupational Therapy, Speech Therapy, specialty Doctor appointments and many diagnoses……. Many!

We would enter one of our toughest seasons yet in parenting. I mean parenting has never been easy and fun for us with our other children, but this season we were entering was the biggest heartache of them all.

As we navigated our way through a very dark valley of medical appointments, wrong diagnosis, the school system, our home life and watching him deteriorate rapidly… I found myself doubting everything especially the vision I knew God had shown me. I was questioning everything I once knew to be true!  

Wrong Diagnosis

You see there was a stirring in my gut as I continued to watch my child decline. As I continued to watch him slip away into a darkness I can’t put into words. Our lives forever changed.

So we continued with doctor appointments while searching for answers…….. But not satisfied.

Then there it was one night, almost 2 years later. It was staring back at me on a screen.

All my child’s symptoms listed. Everything…..

Our nightmare described in 1 word… PANDAS. PANS.

How had we missed this?

Why was this not discussed, mentioned?

Why am I the one figuring this out?

I’m just a mom and I am discovering what this is……

THIS IS PANDAS/PANS

This was not:

  • ADHD / ODD
  • Regressive Autism / PDD-NOS
  • Sensory processing disorder
  • Severe Anxiety with OCD – RAGE
  • Bi polar disorder With hallucinations
  • Anorexia Nervosa

This is PANDA’s

This is PANS

This is our HELL in 1 word, all of our symptoms in 1 word……

And this is our HOPE! This is our journey to healing!

If you have child with multiple diagnoses please take some time to research PANS/ PANDAS

To learn more about Heather’s story as she navigates her son’s continuing battle with PANS/PANDAS/AE, check out her Facebook page.  Trust in the Journey.  

If you have received any encouragement, please share with another momma.

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