Emmett’s in a great deal of pain today and will be for at least the next few days. Yesterday he broke out with mouth sores again and they’re pretty bad. His antivirals are keeping things from being any worse than what they currently are but they aren’t stopping them altogether.
We began doubling up on his antivirals, as we’re supposed to when he’s in a flare-up and hopefully they will disappear over the next few days.
The sores are related to a very rare fever disorder called PFAPA. He’s had this all of his life and while it’s evolved over the years, it’s very, very disruptive. Emmett used to run fevers of 105°F for about ten days, but not actually be sick. He would then be fine for roughly two weeks before another ten days of high fever. This went on and on like clockwork.
He’s had surgery to treat this and while the fevers have largely subsided, we traded that for very painful mouth sores.
A typical flare for him involves mouth sores, painful joints and moodiness, likely caused in part by the pain. He won’t eat and doesn’t sleep. Stress seems to trigger these flare-ups and they can last from a few days to over a week. They no longer appear on a set schedule and typically hit about once a month lately.
His immunologist started him on daily antiviral medication, and that seems to have reduced the severity of the flares. When mouth sores appear, we are supposed to double his dose until they’re gone.
This whole thing would be bad enough on its own, but, Emmett’s Autistic and very much struggles with sensory input. This is an absolute nightmare for him. Today has been pretty bad and there is not much we can do to help him. If this were during the school year, there’s a better than likely chance that it would keep him out of school. It’s a miserable time for him.
PFAPA isn’t nearly as rare as it used to be. I think it used to be misdiagnosed a lot and now docs are recognizing it for what it is. That could be good news for kids like Emmett, as now that it is being seen so much more frequently more treatments might become available. To that end, I asked this a long time ago and at the time Emmett was very anti-mouthwash, but has that changed? The orajel rinse for mouth sores isn’t going to cure anything, but it will help keep his mouth clean and keep bacteria from making the sores worse. Docs also have something called ‘magic mouthwash’ which tastes like sadness but will numb the mouth and throat and maybe help him to be able to eat a little more.
The antivirals help. I can’t even get him to rinse with saltwater.
Well if he changes his mind, there is a product called smartmouth MD that just went through studies and it works just as good as the dentist yuck stuff but tastes so much better