Just got back from Camp Limberlimbs one of four held in the Western region. This year I was the "lifeguard" and cooked burgers LOVED not being in the Medical Shack.
Most of the the Kiddos this year were Poly Articular, and the only two with PsA the most profoundly effected. I don't know about the others but our Kiddo hit the sack at three when we got home, slept till this morning rolled out for her neurology appointment and fell asleep on the way home - no school today
Dr. Peggy did a different thing this year in that the kids wrote books... Three chapters. One on being diagnosed, two on being a personal advocate, and the third describing a scenario that may come up (Ie the PE teacher who made them run xtralps for being slow etc.)
Each kid was able to name their meds, dosages, times and more specifics about their particular disease.
One of the more interesting things was the group pictures of the kids since we started this camp back in the late 80's. Those kids LOOKED like they had arthritis. Year by year they started to look more normal, Our kids were members of athletic teams (we had 3 Division 1 varsity team members as counselors) and fully involved in school and life. Learning to deal with flares was another Scenario ie the kid who leads her track team and wakes up the morning of the state track meet and can't get out of bed with a d\flare. What to you do. (Take a predi burst and cowboy up was the kids answer, the docs said no, too risky for injury)
Going BACK to the pictures, the answer to the change was the evolution of meds.
There were several high powered Docs there as well. The report on new developments was simple "pills" new pills for everything including replacements for NSAIDS. But the other was a change in protocols. Pain medication will be used ONLY in acute situations and they are adhering to the 160 morphine units/six months recommendations. Most rheumies aren't prescribing anyway, but the few that are will be stopping. The evidence that narcos make most forms of arthritis worse is growing rapidly. (osteo and severe joint damage being the exceptions
Early and aggressive Treatment is the norm. (Politically most of the meds will become tier3 instead of specialty tire the next few years) We don't wait until its "worse" anymore................
The one I found most interesting is that Predi is no longer "the devils drug" lower doses are as effective as higher doses. Docs are again prescribing daily doses for pain management so long as the dose is less than 7.5mg (5 is preferable.) But only whe the patient is also taking a bio/dmard combo or primary therapy.
Regular NSAID therapy is in disfavor and for kids not at all acceptable. Some of the new "pills" are NSAID replacements.
There was more of course. We are still in bad shape for pediatric rheumies. I facdt we now have fewer as most are involved in research and few are full time clinicians. I made some great connections for a future community on Bens Friends for JIA teens and parents.
I'll be posting the "books" soon. There is much to be learned for all of us. Also the kid have adopted for their personal "testimony" a great essay from a few years back. Nope it isn't the self serving spoon theory that I dislike, not even close. Its about a plane landing in Holland.