1) IMPAIRED SLEEP–Scratching from 9:30pm-3am, up scratching at 5:30am, sound asleep after 6am. RX: Ice, heat, coconut oil, acupressure, deep breathing, parent physically assists with scratching, calming music, atarax; Sleeps until he wakes at 12, 1, or 2pm. Homebound Instruction and homeschooling. REST the body to allow it to heal.
2) ITCHING— RX: ice, heat, coconut oil, acupressure, deep breathing, parent physically assists with scratching, Microsilk tub bath, oatmeal bath, apple cider vinegar, Buzzy, Benadryl, Zyrtec, Atarax prn, Aquaphor/petroleum jelly. Activity for distraction: ping pong, BBs, archery, active play (still scratching but not as furious,) x-box, ipad games, etc.
3) BURNING/STINGING—RX: moist heat, deep breathing, massage of affected part, ace wrapping, coconut oil/Aquaphor/petroleum jelly
4) LACK OF FOCUS/CONCENTRATION due to SCRATCHING— RX: Parent assists with itch management/scratching while Brian sits and tries to do school assignments and other seated activities
5) MENTAL/EMOTIONAL—Emotionally labile. RX: lots of hugs; constant reassurance; positive music, language, laughter; ace wrapping hands when he is obsessed with picking off the flaking skin. Participate in activities with friends as much as possible.
6) PHYSICAL—still not 100% but improving.
RX: get outside to participate in baseball, go to the gym, play with friends, run around, as much as he is able during the hours he is awake. Regular activities as tolerated. When Brian was feeling better, 2 attempts at doing school ½ day and full day resulted in several-week flare ups. Try to progress again to ½ day of school when able and hopefully full days before school’s out for the summer.
a) SKIN TEXTURE: Pebble-grained texture of dorsum of hands and feet; sandpaper texture of arms and legs. Skin texture of entire back constantly fluctuates between soft and smooth as a baby’s butt to pebble grain texture, with or without redness, sometimes within 30 minutes. Peeling/flaking.
b) SHEDDING— 1-2 Tablespoons dead skin on sheets every day, and more on heavy shedding phase days. RX: Shaking out sheets, bedding, clothes 1-3 x per day and washing daily; moisturize or not with coconut oil, petroleum jelly, or aquaphor
c) EDEMA/OOZING: mild edema in hands and occasionally face. Oozing phases now last only a few days and with minimal breaks in skin. RX: extra sheets to sleep on to absorb ooze and odor; keep skin clean; wrap (arms/hands ) if needed with dry sterile dressing and ace wrap
d) BREAKS IN SKIN due to constant scratching: RX: Microsilk tub bath 1-2x/day, shower, file nails nightly to the nubs, wash hands, keep cuts clean
8) PEDIATRICIAN SUPPORT: for antibiotics for skin infections, medical referral for homebound, provides information on alternative approaches: vitamins, tar preparations, biofeedback, guided imagery, etc.
9) FAITH and PRAYER