Today is Brian’s 483 day of Topical Steroid Withdrawal (TSW), and healing continues–slowly…like watching grass grow…in the dead of winter….
Brian’s skin ‘s been in a flare most of December and January, with the cold and low humidity making things worse.
Since I was taking baseline pictures before we begin a 2-week trial of Traditional Chinese Medicine (TCM) or Traditional Asian Medicine (TAM), I figured I could use them for a picture update, instead of waiting for his “official” 16th month topical steroid-free anniversary. So, I’ve also posted them in the daily log section. He’s still in a flare, but at least his energy and function are great, and he’s really enjoying middle school. What more could a parent ask for?
Primary problems: 1)Itching/scratching 3/5 to 4-/5; night scratching and getting out of bed 1-3 times 2) dry, flaky, shedding skin 3) occasional night sweats 4) occasional skin stinging with heat/sweat 4) moving, rashy erythema on various body parts 5) eczematous patches on bil hands/fingers, wrists and around bil ankles 6) broken sleep due to scratching
Appt with licensed acupuncturist today whose Traditional Chinese Medicine (TCM) or Traditional Asian Medicine (TAM) diagnosis was damp heat eczema, consistent with our ND’s dx. Internal and external heat and damp. Objective is to dispell the heat and cool/moisturize internal and external.
RX: Along with Magnesium, (**Zinc,) B complex, NAC, Glutathione, Vit D3, and Vit B6 from ND and pediatrician, added Herbals (below), fix diet–duh…may try acupuncture later if Brian wants to do it.
**Zinc-out of this; will restart it once TCM effects are observed or after 2 weeks in order to determine cause-effect better.
ITCH relief: spritz water on dry, itchy area and moisturize with organic, unrefined coconut oil and/or the home apothecar’s lemongrass balm
Diet: Avoid fried, greasy, spicy foods, processed sugars, white flour/bread–basically everything we like to eat.
Herbal: 3x/day: 6 pellets Er Chen Wan and 6 pellets Quell the surface, taken at least an hour away from other vitamins and supplements dosed according to his weight: 83#
Click or double click on images to enlarge.
Sleep: fell asleep at 10:17pm last night; up 3+/5 scratching 3:45am–>very dry and flaky–>I spritzed elbows, hands, knees with water and moisturized with lemongrass balm and he fell back to sleep. Up at 8am. Broken sleep nightly due to awakened by scratching and dryness.
Symptoms: soaking wet sheet from night sweating (probably 3rd time this month) faint odor
Labwork: Pending–taken 1/29/15 at pediatrician’s
Itch/scratching: he says 2/10 itch; I see hands moving /scratching at rate of 3/5ss; itch increases with physical and mental stress. Back to mindless scratching. Even when we remind him to do the Dr. W techniques, he ignores us. Spritz and moisturizer (lemongrass balm or coconut oil) helps calm it, but he won’t initiate it. so frustrating….
Skin: (see pictures) flaky, dry, some open cuts from scratching; shedding 1/2 to almost 1 tsp flakes
energy/function: great–CBG-straight A’s both 9 weeks; now playing basketball, conditioning for baseball, and working on running form + exercising regularly
emotional: pretty happy kid but still off and on emotional, but is that TSW or being a 6th grader?
Praying that this will clear up by Spring time.
I’ve been doing a lot of reading, researching, and writing lately and working on a case study and some projects with other moms whose kids are going through TSW. We’re trying to:
“Raise awareness of the dangers of topical steroids, advocate for labeling changes, and revise guidelines for the treatment of eczema.”
We want to make sure no child has to go through the hell on earth that is topical steroid withdrawal. What a great group of mammas on the move!
Keep your eyes open. There are a lot of exciting things on the horizon!
“Thanks be to God! He gives us the victory through our Lord Jesus Christ.”
1 Corinthians 15:57