Diagnosis: PANS/PANDAS

When your child experiences a sudden and drastic change in behavior and emotions, many parents are at a loss.  Understandably, they most often seek medical intervention to find healing and at a minimum, a diagnosis. 

It is not uncommon for a child to be misdiagnosed over and over again with no improvement in these symptoms.  Often the correct diagnosis of PANS/PANDAS is found out when it is too late.

What are PANS & PANDAS?

According to the Childmind Institute, PANS and PANDAS (two separate but related conditions) are:

PANS and PANDAS are severe forms of obsessive-compulsive disorder (OCD) that appear suddenly (acute onset) in young children, accompanied by other confusing and distressing symptoms. 

If the onset of these symptoms is linked to a strep infection, it’s called PANDAS — pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections — which is a subgroup of PANS. Some 86 percent of acute onset OCD cases are linked to strep. Children especially at risk are those who have what doctors call “occult” or hidden strep infections — that is, children who can be “carriers” of the infection but don’t get symptoms themselves, and hence don’t get treatment.

PANS cases have also been linked to other infections, including Lyme disease, mononucleosis, mycoplasma (walking pneumonia) and the flu (such as H1N1). 

PANS Hits Home

Two summers ago, my family was thrust in one of the most frightening experience of our life. 

Overnight, we lost our 12 year-old daughter.  She lost her joy.

The word horrifying does not do justice for the drastic emotional spiral that my daughter experienced that summer.

We were trapped and paralyzed by my daughter’s terror…  wait… what?  Terror?  Yes.  Terror.

Before the Diagnosis

Many of my dear friends and community know that my oldest daughter is one of the happiest and most loving people ever.  Really and truly.  She was born with a smile on her face and has always been known for her empathy, kindness and heart for others.  Her zeal for life and hunger for adventure and thrills made her the perfect roller-coaster date for her daredevil daddy.

So when my oldest woke up one morning in a state of frozen terror at the thought of leaving me, we knew something was up.  The severity of her separation anxiety and her sudden obsession that I was going to die if outside her presence was so massive and demobilizing for her, that she could not even be in a separate room from me. 

Desperate Search for Answers

After months of searching for answers, by God’s mercy and intervention, a neighbor reached out to me and told me to get a Strep test for my daughter.  (Yes.  As in Strep throat.) 

She told me that her son had gone through the same thing a year prior.  She ended up begging for a Strep test and full workup for her son as she had heard of this illness striking children left and right.  Apparently, it had something to do with the Strep bacteria…

Because she couldn’t find any other logical answers for the fact that her son suddenly couldn’t function away from her, she figured she had to try.  It was then that her doctor confirmed that her son was infested with the Strep bacteria (with no symptoms apart from sudden onset of severe anxiety and OCD-like behaviors). 

This mom like so many others had to FIGHT to get a proper diagnosis for her son’s PANS/PANDAS.

Her son has made a full recovery.   Unfortunately, this is not always the case.

My Daughter’s PANS/PANDAS Diagnosis

The two months of PANS in my home is exactly how so many other moms describe it.  It was HELL.

My daughter was tormented every day by fears and thoughts that she couldn’t stop… fears and images of losing me.

That summer, she did not go to one sleepover.   My precious girl spent the entire two months clinging to me and sobbing in fear.  She was so confused about what was happening to her as were her father and I.  No one understood.

My martial art-loving, friend-seeking, fun-loving daughter did not leave my side that entire summer because of debilitating fear.  It was hell.

Watching her suffer in such emotional turmoil and agony was heartbreaking.

But God…

By His grace that neighbor stoppped by my house that Sunday afternoon.

And because I had nothing to lose, I opened up to her about this summer from you-know-where.

Of course, in His infinite mercy, He led me to the knowledge I needed to get my child diagnosed by an amazing Nurse Practitioner.

 

PANS/PANDAS: Professional Ignorance

Many doctors try to “poo-poo” the idea of PANS/PANDAS because they don’t know enough about it.

Sadly, we have all heard stories about doctors who dismiss a mom’s cry for help as dramatic and emotionally-charged

However, I am so grateful that our story did not lead us to a dismissive doctor.   Kim Bivens, RN, CPNC, MS and the team of doctors at  Arboretum Pediatrics in Charlotte, NC were amazing and took this emotional momma seriously.

After hearing my daughter’s symptoms, Kim immediately grabbed the other doctor still in the office and debriefed him.  They both agreed that a full blood work-up was warranted based on my daughter’s sudden onset of severe separation anxiety.

Within two days, we had the first of 5 vials of blood back… my daughter’s blook was flooded with pneumonia (mycoplasma) bacteria.

The pneumonia bacteria displayed itself only through my daughter’s sudden OCD-like behaviors and fears.  We had zero indication that she had pneumonia.

My daughter was immediately treated with low-dose anti-biotics for 30 days and is back to her old self.

Diagnosis PANS/PANDAS Came Soon Enough… for us….

This is rarely the case.  Here is the story of another mother fighting for her son finally diagnosed with PANS/PANDAS after 7 misdiagnoses.

Don’t do this mom thing alone, Friend

Moms, we have got to be willing to do this parenting thing differently and fight for our children regardless of what others think of us.

God chose you on purpose to parent your child.  You can do this!!!

Join an amazing community of moms fighting to equip outside-the-box high-needs kids for a life of confidence & purpose.   Join my private Facebook Group today.   I’d be honored to walk alongside you, Friend.   #momsequippingmoms

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

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