So, what is PANDAS/PANS?
Last year, our oldest son, Jack, was diagnosed with PANDAS/PANS. Over the past year, we’ve learned a lot about the brain, the body, and the impact an autoimmune disorder can have on both in the life of a young child.
After a year of being quiet about what our family has gone through, I feel both compelled and called now to share our story. If Jack’s journey and our experience as a family has the ability to impact even one family who is suffering or who knows someone who is suffering from this disorder, I want to help. And the best way I can do that is by being honest about what we’ve gone through and are continuing to go through with our sweet Jack.
As I mentioned in this post, there are aspects of Jack’s journey that will be off limits. With that said, there are many things I can and will share to help bring awareness to this condition and the estimated 1 in 200 families it affects in our country every year.
Because there is ongoing research into this new (and, in some cases, unrecognized) condition, I want to share with you what is commonly understood about PANDAS/PANS. So, I’ve broken this post down into what PANDAS/PANS is and what it isn’t. First, we’ll start with what it is.
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (Strep). PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. An autoimmune disorder is a condition in which your immune system mistakenly attacks your body. In the case of PANDAS/PANS, the immune system attacks the brain.
These attacks on the brain are life-changing. One day, my child was a functioning human being. Overnight, he changed. And he has experienced every one of the top symptoms listed below.
Impacts on mental health
OCD (obsessive compulsive disorder)
I want to be clear about what OCD is, and what isn’t. Before having a child diagnosed with OCD, I thought OCD meant someone who was a neat freak. Because of this misnomer, OCD is often tossed around jokingly, but it is not funny. OCD is so paralyzing to our son that there are days at a time when he cannot leave the house. He becomes so fixated on a thought that he becomes paralyzed by the thought. Once he feels better, he is remorseful and cannot understand why he could not control his thoughts. It is utterly heartbreaking.
Severe anxiety & separation anxiety
Prior to being diagnosed with PANDAS/PANS, school was Jack’s favorite place on earth. Jack has been in school since he was eighteen-months-old and always thrived on the routine, lessons, and friendships the classroom brought. He always had wonderful relationships with his teachers and was a very social, bright young man. In addition to OCD and the other symptoms I will share, Jack was placed on medical leave because of the severe anxiety attacks he would have about going to school. It would take hours (yes, hours) to get him in the car each morning, and he would fall apart when he had to enter the school building. Knowing our son, who loves to learn with every fiber of his being, this absolutely breaks our hearts.
Impacts on daily life
Though we didn’t realize it at the time, this was actually one of the first indicators. Jack was going to the bathroom more than a dozen times a day at school alone. The level of frequency continued at home as well.
Out of respect for Jack, I will not go into great detail about this subject, but it is a factor that we deal with regularly. Jack is never physically aggressive, but when his panic attacks, anxiety, and OCD are heightened during a flare up, they are overwhelming to him, and to us. So much so, that he was hospitalized for two weeks in 2017 to treat both the illness that was coursing relentlessly through his body, and the behaviors that manifested as a result.
Jack wakes up every night from 3:00am – 5:00am. We have tried everything: a calming bedtime routine, Melatonin, medications. He still wakes up. He will come and tell us he can’t sleep and he doesn’t understand why. His body is tired, but he just can’t. It puzzles him, and us.
Loss of appetite
Last December, Jack lost 10% of his body weight in one month. To put that in perspective, think of your adult body. Let’s say, you weighed 150 pounds and lost 15 pounds in 4 weeks. That’s almost four pounds a week. Even a rigorous diet in which you were actively trying to lose weight by controlling your food intake, and increasing your activity level significantly, would be at most 2 pounds per week. Jack lost twice that amount per week by doing absolutely nothing.
Impacts on schooling
Dysgraphia (handwriting difficulties)
When Jack is healthy his handwriting is beautiful. He writes stories, cards, and letters to his friends with ease. When he is ill, his handwriting is unrecognizable. It bounces all over the page and his sentences don’t make sense. Our usually eloquent writer is rendered dysgraphic when he is sick.
Dyscalculia (math difficulties)
Jack was doing math problems when he was three-years-old, but now math is a great struggle to him. He gets lost in the steps he must take to solve a problem, and often tells us he can’t understand why it is so hard for him when it didn’t use to be.
When Jack is in an active flare up he has days when he can’t remember how to get dressed, where to find food in our house, or the last sentence you read to him in a book (he reads at an eighth grade level normally). Most recently, he and his dad hung a 2018 calendar in his room. Thirty minutes later, he asked my husband if they could hang the calendar. Jack normally has a mind-blowing memory. He can remember what happened, by date, everything that has happened in his life with such precision, it’s scary. Unless he is sick. Then he doesn’t remember, or remembers very little.
Unless my son is experiencing neuropsychiatric symptoms and is in an active flare up, you will not be able to tell he has PANDAS/PANS. He looks like a normal eight-year-old boy. When he is healthy, he will talk, play and interact as he normally would. This is both wonderful and challenging. Because we obviously do not see people when he is unwell, people do not understand the level of severity of his case. This leads to a bigger issue, which I will discuss in a future blog post about invisible disabilities.
We do not know why some children develop PANDAS/PANS, and others don’t. Why strep and other infectious triggers cause a sudden onset of life changing symptoms in some little ones, and not others. According to this research, there are some clinical indicators including the following:
- Family history of autoimmune illness
- Bad relationship with Strep infections (Repeat strep infections, Rheumatic or Scarlet Fever)
- History of Upper Respiratory cough, sinus issues, or allergies.
- Family mental health history of anxiety or related issues
Additionally, many doctors and health practitioners do not acknowledge this condition. My call to these practitioners is to read posts, like this one, and information from families who are walking this journey. It is easy for something to seem impossible on paper, but palpable in real life. I invite practitioners to read this research via the National Institutes of Health on the clinical management of PANDAS/PANS.
At least not yet. Like all other autoimmune disorders it is treatable (to some extent) but not curable. Thus far, the right treatment plan has been elusive for Jack. We have tried several courses of treatment over the past year. Sometimes they work, sometimes they don’t. When they do work, the treatment doesn’t last. Jack gets sick again, develops a flare up again, and the treatment that worked before often doesn’t work, again.
As I mentioned about PANDAS/PANS is a disorder. It is not contagious. You can catch a cold. You can’t catch PANDAS/PANS. This means Jack can socialize, play with, and be around people. He loves to play and spend time with friends. It is just a matter of him being healthy enough to do so.
Do you have a child with PANDAS/PANS? If so, are you receiving the support and information you need? Do you feel others understand what you are experiencing? Share this post to spread awareness and understanding!