No, It’s Not His Imagination! A Mother’s Take On PANDAS.

There were countless nights where he jumped up from his bed and began screaming so loudly!  I had never heard a scream like that before.  His cries broke through the darkness of his room and my darkened hallway to pierce right through my heart.  I ran to his room, scooped him up from his bed, and cradled him as if he was a baby again.  

The day started just like any other day.  My cellphone alarm clock rang at 7:15am and I contemplated hitting the snooze button just one more time.  I did.  So, as usual, I finally arose from my bed around 7:40am and proceeded to the bathroom to brush my teeth.  I went down the hall to wake up Nugget, who was 4 at the time, and take him into the bathroom to begin his morning routine.  There was something different with him this morning.  He had refused to touch the floor!  He kept screaming that he didn’t want to get out of bed and was pointing to the floor.

I told him we were already running behind and that he couldn’t start playing any lilypad games.  You know, the games where you can’t touch the floor and use rugs to hop from one space to another.  He said he couldn’t touch the letters on the floor, because they hurt his feet.  I repeated myself, “Nugget, we don’t have time.  We are late for school!”

He still refused to move and started crying.  I held his hand and guided him to the bathroom.  As we walked down the hallway, I noticed that he was taking such awkward steps.  He was walking on his tippy toes and taking quick steps as though he was walking on hot coals.  He kept screaming that the letters on the floor were hurting him.  In the bathroom, he said that the witch was coming up from the bathmat and he didn’t like her.  At that point I thought, could he be sleep walking?

“Are you awake Nugget? It was all a dream.  It’s okay, you are safe now. ”

If only that were true.

We finally made it to the kitchen for breakfast and I was packing his lunch when I turned to look for his backpack.  Nugget was staring at the floor.  His eyes didn’t move from that one spot!  He was transfixed on it.  I asked him what he was looking at.

“Mommy, the witch keeps coming up from the floor and is going to take my friends away”

I had enough!  There was something wrong.  It wasn’t his imagination!  My son was hallucinating right in front of me!  I took him straight to his pediatrician who then suggested we go directly to the Emergency Room.  They shared that Nugget was exhibiting signs of this thing called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections).

PANDAS is a rare reaction to strep infections where the body mounts an attack on itself in response to fighting the strep bacterial infection.  Antibodies attack the brain causing almost overnight changes in behavior.  Who would have thought that the strep infection he had just been diagnosed with a few days prior were causing these hallucinations!  My son didn’t have a fever with the strep throat infection, rather a red rash (known as scarlet fever) over his face and chest a few days prior to the hallucinations.  I thought the rash was caused by a new laundry detergent.  When it continued to spread even after switching all his linens and clothes, I took him to the urgent care where a rapid strep test indicated my son had strep throat.  How odd that he never had a fever temperature.  The rash could have been anything!   A few days later, Nugget started talking about the letters on the floor.

In the emergency room, Nugget was given a strong antibiotic through an IV and we were told to finish his Amoxicillin prescription that was just prescribed a few days earlier.  The physicians were hopeful that his symptoms would subside after he finished the 10 day course of antibiotics, but that sometimes it can take weeks, months, or even years to resolve.  GULP!!!

There were countless nights where he jumped up from his bed and began screaming so loudly!  I had never heard a scream like that before.  His cries broke through the darkness of his room and my darkened hallway to pierce right through my heart.  I ran to his room, scooped him up from his bed, and cradled him as if he was a baby again.  I can’t begin to describe how much my son had changed from his normal, playful self.  His reasoning skills had changed, he was extremely argumentative even with the most obvious things, and he argued that he had done things that he had not.  He refused to eat his favorite foods and would become over emotional and cry about things that didn’t go his way.  Now I know this is normal for 4 year olds, but boisterous tantrums and fits over cartoon shows finishing or snacks running out were very unusual for him.  He was also acting out his frustrations at Chi-Chi.  Things that he would normally shrug off were instant triggers to hit or kick his little sister.  Nugget is normally more patient with his sister.

It took a little over a week after he finished his antibiotics to return to normal.  I did get him back, but he still continues to talk about the time he saw the letters on the rug in his room.  He knows that it wasn’t real, but I did have to remove the rug from his room.  Why do I write about this experience a year later…..because my son just got strep throat again and the behavior changes have occurred again.  It is clear to me that this reaction is not a hoax or questionable, but a real reaction that hunts my son with every strep infection.  We are currently looking into alternative treatments and will be meeting with an Ear, Nose, and Throat specialist.

Trust that you know your child and get the medical care needed.  Be sure to get your child evaluated should you see a red rash occurring on their face and body along with behavior changes as this could be a sign of PANDAS.  Not everyone in the medical community believes that PANDAS actually exists.  I’m here to tell you that regardless if it’s called PANDAS or something else, my son was not acting like his normal self with his strep throat infection.

Looking for more information on PANDAS, check out these articles.

http://www.parents.com/kids/health/other-health-issues/pandas-syndrome/

http://www.medicinenet.com/pandas/article.htm

https://iocdf.org/wp-content/uploads/2014/10/PANDAS-Fact-Sheet.pdf

Please note that this post is my experience with PANDAS and should not substitute medical advice whatsoever.  Strep infections are serious and can cause systemic effects when not treated.  Please seek medical advice ASAP if you suspect your child has contracted a strep infection.