Handling A Controversial Diagnosis and an Unknown Prognosis with Grace

On a warm summer night last year, our lives were changed for the foreseeable future. We tucked our son into bed just as we had done countless times before. But this night was different than most. I usually love bedtime. I love the hugs and kisses and cuddles with books. I love the quiet and calm that follow. But that night was different. I was dreading what would happen after we shut that door.

He was already screaming and climbing out of bed before we’d even had a chance to close the door. He began banging just moments later. For the next hour, we watched him on the video monitor as he checked dresser drawers, book shelves, and each of his toy bins over and over. We listened to him moan and whimper as he tried to go to sleep over and over again. But he just couldn’t. He couldn’t stop moving. He couldn’t stop checking and rechecking. As we watched, we wondered if it was possible to have OCD at four years old. We wondered what it might be like to have a child with a mental illness. We wondered what our pediatrician would tell us when we called her in the morning.

Less than twenty-four hours later, we had our diagnosis. John has PANS, or pediatric acute-onset neuropsychiatric syndrome. In layman’s terms, it means that 70% of the time, John is fine. But the other 30% of the time? John suffers from OCD behaviors, anxiety, night terrors and sleep disturbances, and facial and verbal tics. Any time his immune system kicks in to fight an illness- anything from the common cold to ear infections, he suffers a flare-up of symptoms that often lasts for days and even weeks after the actual illness has passed.

John has had three major flare-ups since last summer, in addition to a handful of smaller ones. He has endured frustrating tics like intense blinking and constant throat clearing. He has felt the obsessive need to rearrange his toys and clothes, name every type of food before he eats it, and chew excessively before swallowing to prevent the unlikely possibility of choking. He has woken us up countless times, screaming my name, but unable to wake up from a night terror. His symptoms are debilitating when they show up, and it has been horrible to have to watch him suffer.

John’s diagnosis is controversial. His pediatrician wholeheartedly believes in it, but many doctors and nurses don’t even believe that PANS exists. It’s so hard to watch your child suffer from a disease that some people claim doesn’t even exist. As if it’s all in my head. Or more accurately, his head. As if the fact that it is a psychiatric condition makes it less real. But it’s not just a psychiatric condition. It’s neurological and immunological as well. That’s why it’s treated with antibiotics and ibuprofen, with therapy as a final option when medication doesn’t quite alleviate all the symptoms.

John’s prognosis is unknown. Some kids have occasional flares that disappear with medication, and then it all disappears when they hit puberty. Other kids require round-the-clock medication to keep the symptoms at bay. Some kids need regular therapy, and in the worst cases, they are “institutionalized” because they have become violent (another possible symptom of PANS that John does not exhibit, thankfully). Some kids never grow out of it, and just receive a different diagnosis when it can no longer be considered “pediatric.” I’ve learned that the internet can be a very dangerous place, and sometimes joining online support groups can be the worst choice a parent can make- the parents with children with the worst cases tend to be the ones who need the most support after all.

John has a team of doctors assigned to his case. We work most closely with his pediatrician, but he also has a neurologist and a psychiatrist available if/when we need them. The neurologist has helped us manage John’s tics, and the psychiatrists can be called if ibuprofen and azithromycin are not enough to completely manage his symptoms. We’ve not made much use of either at this point in our PANS journey, but it’s comforting to know that they’re there if we need them. John will be on a low-sugar diet for the foreseeable future, and currently takes daily vitamin C and D, all of which are meant to boost his immune system. The idea is that if he doesn’t get sick often, he won’t have as many flares. And if you consider how often Felicity has gotten sick this past year compared to John, we have plenty of reason to believe that these changes have helped!

There’s still a lot that’s uncertain about John’s future with PANS. We’re constantly worried about how he might get sick, or what kinds of symptoms might manifest, or whether or not ibuprofen is going to cut it this time around. We’ve gotten used to checking food labels and taking daily supplements. But you just never get used to hearing your five-year-old ask how much sugar is in the snack he’s just been given. We’ve learned a lot about trust and living in the current moment. We don’t know what the next year will bring. We don’t know what kinds of symptoms he will develop during his next flare, or how many flares he will experience in the next year. There’s a lot that we don’t know, so we’ve all learned to focus on what we do know- that John is loved by us and by God, and that God is with us, present in our joys and our sufferings, our moments of celebration and those of discouragement. And that God will give us the grace necessary to handle whatever comes.

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