Diagnosis: What Is PANS/PANDAS?
With childhood mental illness more prevalent than ever, it is critical that parents be armed with information, particularly as related to what is PANS/PANDAS.
When child experiences a sudden and drastic change in behavior and emotions, parents are at a loss. Symptoms such as anxiety, fear and worry lead parents to try reason with their children to help them get through it. When that doesn’t work, parents eventually seek help from a counselor or other mental health professional.
Talk Therapy Often Doesn’t Work
When that fails to bring relief, 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. Even worse, the correct diagnosis of PANS/PANDAS is discovered when it is too late.
What Are PANS & PANDAS?
According to the Childmind Institute, PANS and PANDAS (two separate but related conditions) are:
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… hidden strep infections — that is, children.. can be “carriers” of the (strep) 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,and mycoplasma (walking pneumonia)…
PANS Hits Home & Stole Our Kid
Two summers ago, my family was thrust in one of the most frightening experiences of our lives. Overnight, we lost our 12 year-old daughter. She lost her joy.
The word horrifying does not do justice for the drastic emotional spiral my daughter experienced that summer. Consequently, we were trapped and paralyzed as a family.
Before the PANS/PANDAS Diagnosis
My oldest daughter is one of the happiest and most bubbly people ever. Really and truly. She was born with a smile on her face and has always been known for her empathy and heart for others. Her zeal for life and hunger for adventure is infectious. She is 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 sudden separation anxiety and fear demobilized her. She was consumed with the thought that I would die. She could not even be in a separate room from me for fear of losing me.
Desperate Search for Answers
After months of searching for answers, by God’s mercy and intervention, a neighbor stopped. For some reason I opened up to her about what was going on with our daughgter. She suggested I ask for a Strep test for my daughter.
Yes. As in Strep throat. This friend proceeded to tell me that her son had gone through something similar a year prior. She ended up begging for a Strep test and full workup for her son. She had heard of a debilitating illness striking children left and right.
Strep Throat Can Change A Child OVERNIGHT
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.
At that point, she brought her son to the pediatrician and it was then that her doctor confirmed it. Her son was infested with the Strep bacteria (with no symptoms apart from sudden onset of severe anxiety and OCD-like behaviors).
However, 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.
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My Daughter’s PANS/PANDAS Diagnosis
Sadly, 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 thoughts of losing me. She spent the entire two months clinging to me and sobbing in fear. We were so confused about what was happening to her. No one understood. Watching her suffer in such emotional turmoil and agony was heartbreaking.
It is by His grace that my neighbor stopped by my house that Sunday afternoon. She and I had never really discussed anything personal up to that point. But for some reason, I felt led to open up about my daughter. It was then that she shared her story of her son.
She gave me the information I needed to get my child diagnosed properly.
PANS/PANDAS: Professional Ignorance
Sadly, we have all heard stories about doctors who dismiss a mom’s cry for help as dramatic and emotionally-charged. Many doctors try to “poo-poo” the idea of PANS/PANDAS because they don’t know enough about it.
However, 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.
A Doctor Who LISTENS Makes All The Difference
They took this emotional momma bear seriously. After hearing my daughter’s symptoms, Kim immediately collaborated with another doctor.
They concluded that a full blood work-up was warranted due to my daughter’s sudden onset of separation anxiety and persistent thoughts (OCD). Within two days, we had the first of 5 vials of blood back. My daughter’s blood was flooded with pneumonia (mycoplasma) bacteria.
We had zero indication that she had pneumonia. The bacteria showed itself only through my daughter’s sudden anxiety and fear. My daughter was immediately treated with low-dose anti-biotics for 30 days and is back to her old self.
Diagnosed PANS/PANDAS Early
This is not always the case. Here is the story of another mother fighting for her son finally diagnosed with PANS/PANDAS after 7 misdiagnoses. Read Heather’s story and learn about her son’s battle with PANS/PANDAS.
The more that we moms share, the more awareness and intervention for our kids.
Community Between Moms Revealed PANS/PANDAS
Friend, it was a brief pop in visit by another mom that was key to helping my child. Community and mom relationships are crucial for so many reasons. We need one another. We must be brave and fight for our children regardless of what others think of us.
If your child is showing signs of sudden onset OCD, anger, rage, anxiety, poor penmanship, violence, eating issues. Get your child seen.
Insist on a simple blood panel for PANS/PANDAS. Do not take no for an answer. God chose you to parent your child. You can do this!!!
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