Every heard of PANS (Pediatric Acute-nset Neuropsychiatric Syndrome)? I hadn’t either. That is, until, it hit my home one summer. Here is my family’s story of PANS, which appeared as an overnight onset of severe separation anxiety and OCD. I wish I’d known about it sooner.
What are the Symptoms of PANS & PANDAS?
According to the Childmind Institute, PANS and PANDAS (two separate but related conditions) have the following symptoms:
- Severe forms of obsessive-compulsive disorder (OCD) that appear suddenly
- Occur most often in young children
- Other distressing symptoms
Shockingly, up to 86% of OCD is related to PANS or PANDAS.
How Do Kids Get PANS Syndrome?
The following bacterial infections are linked to PANS Syndrome.
- Lyme disease
- Mononucleosis
- Mycoplasma (walking pneumonia)
According to Childmind, children who are especially at risk are those who are carriers of an infection but don’t show symptoms. CD symptoms linked to a strep infection are referred to as PANDAS.
When Talk Therapy Doesn’t Work
When a child experiences a sudden and drastic change in behavior and emotions, parents are at a loss.
Symptoms such as anxiety, extreme fear, and worry lead parents to try to reason with their children to help them get through it.
Understandably, when that doesn’t work, parents seek help from a counselor or other mental health professional.
Further, when that fails to bring relief, they seek medical intervention to find healing, and at a minimum, a diagnosis.
Sadly, children can go through several misdiagnoses with no improvement in symptoms.
Even worse, the correct diagnosis of PANS/PANDAS is often discovered when it’s too late.
PANS Syndrome Hits Home & Stole Our Kid
Four summers ago, my family experienced one of the most frightening seasons of our lives.
Overnight, we lost our 12-year-old daughter, and she lost her joy.
The word horrifying doesn’t do justice to the drastic emotional spiral my daughter experienced that summer. Consequently, we felt trapped and paralyzed as a family.
Before the PANS/PANDAS Diagnosis
Before this point, my oldest was the happiest and most bubbly people ever.
Born with a smile on her face, she was known for her empathy for others. She had a zeal for life and a hunger for adventure.
So when she 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 became consumed with the thought that I would die. She could not even be in a separate room from me for fear of losing me.
OCD is Not Just A Fear of Germs
At the time, I didn’t realize that my daughter’s intense fear of me dying is a symptom of OCD.
According to Mayo Clinic, persistent and unwanted thoughts or images that are intrusive, and cause distress or anxiety are symptoms of OCD.
My Daughter’s PANS Syndrome Diagnosis
Sadly, my daughter’s 2-month experience with PANS Syndrome was HELL.
She was tormented every day by fears and thoughts that she couldn’t stop. Her primary fear: losing me.
Ultimately, she spent the entire two months clinging to me and sobbing in fear. As such, we were so confused about what was happening to her.
No one understood, and seeing her in turmoil and agony was heartbreaking.
Desperate Search for Answers
After months of searching for answers, a neighbor stopped by one afternoon.
For some reason, I opened up to her about what was going on. Ultimately, she suggested I ask my pediatrician for a Strep test for my daughter.
Her son had gone through something similar the year prior. At the time, she couldn’t find a logical reason to explain why her son suddenly couldn’t function away from her.
At that point, she brought her son to the pediatrician, and it was then that her doctor confirmed it. Her boy was infected with Strep bacteria (with no symptoms of strep throat).
Fortunately, after being treated, he made a full recovery. Sadly, this is not always the case. Ultimately, I’m grateful she gave me the information I needed to get my child diagnosed properly.
PANS/PANDAS: Professional Ignorance
Tragically, it’s not uncommon for doctors to dismiss a mom’s cry for help. Often labeling mothers as dramatic and emotionally-charged.
To this day, many doctors disregard the idea of PANS/PANDAS because they don’t know enough about it. However, our story led us to an informed and compassionate doctor.
She took this emotional momma bear seriously. After hearing about my daughter’s symptoms, she immediately collaborated with another doctor.
Full Blood Work-Up
They concluded that she needed a full blood workup. Her sudden onset of separation anxiety and persistent thoughts (OCD) clued them in.
Within two days, we had the first of 5 vials of blood back.
My daughter’s bloodwork revealed Mycoplasma bacteria despite having no symptoms of pneumonia.
To clarify, the pneumonia bacteria presented only through my daughter’s sudden anxiety and fear. As a result, they treated her with low-dose antibiotics for 30 days, and she was back to her old self.
Recap: PANS Syndrome
Friend, a brief visit by a mom up the street saved 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, or eating issues.
Take your child to their pediatrician and insist on a simple blood panel for PANS Syndrome and PANDAS. Don’t take no for an answer. You’ve been chosen to parent your child. You can do this!!!
The more we moms share, the more awareness and intervention for our kids.
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Wow! Thank God for your neighbor and that you were able to scale through this. It must have been a trying time for your family.
Yes!!! It was completely the work of God as this neighbor had not once in almost 10 years living in that house. ever just randomly “stopped by.” Grateful for His mercies. 🙂 Thank you for your encouragement.
Wow, I had no clue this existed! Thank you for sharing your story and raising awareness!
Grateful to be able to share this information. Just posted another momma’s story today. She is still fighting for her son daily.
I have never heard of this before, thank you for sharing. I am so glad God directed your steps to get your daughter the help she needed. We really can’t do this parenting thing alone.
Tamara, Thank you for your kind words. I had NO IDEA about this until it hit our home so suddenly. It was beyond frightening! So grateful for early diagnosis (even after 2 months of incredible fear and paralysis as a family). God allows us to experience these trials and by His grace equips us to share to protect and serve others. 🙂 Have a wonderful day, Tamara!
This is such a great post and definitely needed. 🙂
I listed your website as a resource on my PANS and PANDAS page.
God bless you!
Chemical Free Gal
Thank you for those kind words. Grateful! 🙂
very detailed information, useful for parents