The Plot Thickens: Enter PANDAS (Not as friendly as it sounds)

We have had both a relieving and panic-inducing piece to James’ puzzle revealed recently.

 

It started a little over a month ago when he was miserable with these bizarre ulcers on the bottom half of his tongue. We thought it might have been either an allergic reaction or something viral, but we went to see the pediatrician in case there was anything we could do about it. Turns out that this was a complete Godsend of a reaction.

 

This past year, I have had this unnerving paranoia about strep. Though his throat was only slightly red, and he did not have a fever, we asked if they could swab him. And it was positive.

 

So immediately we made an appointment for his little sis and also had her swabbed. The past two times he had strep, she unfortunately had it as well. We thought we had some kind of virus running through the house, so we wanted to make sure we were not mistaking strep for a virus. And her test was negative.

 

Because of no obvious strep symptoms, this made me wonder if James had ever actually gotten rid of his previous strep infections. And made me wonder a bit more about PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). As the name reveals, it’s an autoimmune condition brought on by strep bacteria that affects the brain. Symptoms include:

 

  • OCD
  • Tics
  • Extreme mood changes
  • Irritability
  • Bedwetting or change in urinary frequency
  • Separation anxiety
  • Sudden onset

 

Check, check, check, checkity check

PANDAS

 

We asked his pediatrician about it, and he mentioned we could retest him for strep after antibiotics to see if they had done their job. A week after we finished the course of antibiotics, we did just that. The rapid test in the office came back negative, but the culture came back positive with Group A Strep. Later, blood work showed that his antibodies for strep were SEVEN TIMES the high number of the normal range, thus indicating PANDAS.

 

Though this was terrifying information, things finally started to make sense. One of the big signs of PANDAS is the sudden onset, often pinpointed to the day that your child turned into a different kid. We are now wondering if he encountered this bacteria, which triggered an autoimmune response, 2.5 years ago. It seemed like overnight my calm, sweet baby boy became angry, aggressive, and completely unpredictable. His favorite songs would bring on screaming and tears. A moment of laughter could turn into rage in a second. We started walking on eggshells waiting for the next explosion. Food pickiness went through the roof and overall rigidity went with it. It felt like we lost him.

 

With all of the changes in his life, including the new baby, move, start of school, and just general age, it was easy to write off these behavioral changes. But deep down, I knew something wasn’t right. This poor child has been so sick, y’all.

 

So we are in the process of figuring out how to restore his health with this new information. Thankfully, we have a good start on this path with his anti-inflammatory diet. We are also under the care of functional medicine practitioners who are leaving no rock unturned. They are taking a completely comprehensive look at him, thinking about how to boost his immune system, seal up the gut lining and blood-brain barrier, and get rid of the strep (which is also likely in his gut). I am SO GRATEFUL. I can’t begin to tell you.

 

Unfortunately, when someone has a disability or diagnosis, it is so easy to write off their symptoms to that disability or diagnosis. “Well, aggression can be part of autism.” “Lots of kids who have autism have GI issues.” Or “sensory challenges go along with Down syndrome.” But why?? What is happening in the body to cause these symptoms? What is the root cause? I am elated to be under the care of people who are looking at what is physiologically going on inside his body to cause these behaviors or symptoms. And I am so hopeful that I’m getting my baby back. Only God knows to what extent his healing is taking place..but it is taking place.

2 Replies to “The Plot Thickens: Enter PANDAS (Not as friendly as it sounds)”

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