These pictures were taken on Monday. Sam's skin was very red and swollen. It was worse on Tuesday, but starting to look better today (I think? I still don't always trust my perception of what's happening with his skin because I know sometimes I see only what I want to see). The third picture shows his skin next to mine, for comparison. He's a little lobster! This is off all medication.
There have been several suggestions made as to why his skin is red, and why the redness has been unchanging for some time. So here are some possibilities:
1) He has a yeast or fungal infection on top of his eczema, and the infection must be treated for the eczema to go away.
2) He recently had hand, foot, and mouth virus with a nasty rash, and this rash is still left over from the virus due to high levels of biological detergents circulating in the bloodstream (who knew there was such a thing?? Thanks A.J.)
3) The red pigment of his skin is due to blood vessel dilation or HPA axis suppression, both potential complications of topical steroid overuse or misuse.
So, I suppose time will tell which we are dealing with. Some who read this will already know that I have been on an emotional roller coaster ride even considering that we are dealing with #3 after having been contacted by a few kind-hearted and very well-meaning people who are already suffering from Red Skin Syndrome or Topical Steroid Addiction Withdrawal. While some doctors dispute the existence of such withdrawals, the official FDA label on Triamcinolone and Hydorcortisone creams clearly allows for this:
Infrequently, signs and symptoms of steroid withdrawal may occur, requiring supplemental systemic corticosteroids. Children may absorb proportionally larger amounts of topical corticosteroids and thus be more susceptible to systemic toxicity (See PRECAUTIONS-Pediatric Use). If irritation develops, topical corticosteroids should be discontinued and appropriate therapy instituted.
The reason for my concern over Sam having such a complication due to steroid use is because of the suffering that many of these people are going through in order to fully withdraw and heal from topical or oral steroids. I visited the blog of one little boy four months into being completely off topicals and it still haunts me! Not only has Sam been on the topicals for 16 months but his allergist also prescribed 3 ten-day courses of oral steroids in the past 8 months, which are a more serious problem and only to be prescribed as a last resort.
I will be honest, yesterday I was sold on Red Skin Syndrome, but today I feel less emotional and am equally considering that we may be dealing with an infection or viral effect. No sense losing my head until I know for sure, right?
To address the possible infection, I am planning to do a week of dilute bleach baths. I know it sounds a bit crazy. I would never have tried them before, but I have done so much this past week toward cleaning up and de-toxing our home environment, and I feel like if this is an infection holding us back from seeing the potential effects of reducing dust and detergent, I need to address this. I did take Sam to a doctor two days ago who came highly recommended, and he was open to all of my concerns, but admitted Sam's case was beyond his expertise and wanted to send us to Egleston Children's Hospital for a skin culture. Only problem is the soonest available appointment is in September and I can't wait that long. We are on a cancellation list, but in the meantime, I don't think the bleach baths will hurt ( I've had several moms recommend these to me) and I don't intend to use them long term.
This past weekend was a whirlwind of cleaning, scrubbing, vacuuming, and dust removal. I had my mom take the kids overnight and spent a total of 21 hours tackling our dust! I sucked up at least two vacuum bags worth of dust out of our carpet, walls, doors, baseboards, and our air!! Oh my goodness. There must have been 5 inches of dust coating every side of the air intake box in our house, and all the vents were blocked by significant amounts of dust, not to mention our ceiling and floor fans. All so dusty! I cringe to think of the air Sam was breathing in, after testing very allergic to dusts on his skin test. All of our mattresses and pillows are covered, and I also packed away dozens upon dozens of dust traps that were in the open such as stuffed animals, blankets, coats, sweaters, and draperies. All vacuum sealed in space saver bags.
That's a huge dust mite reduction! I am still vacuuming every day, obviously not to the same extent but on maintenance level, and trying to spend a good 10 minutes in each room on the carpet especially. I had read that it can take up to a week after reducing the dust in a home to see improvements in the skin of a dust allergy sufferer. So I'm still holding out for that improvement! I could have sworn Sam's skin was looking just a little better today! It was for sure less red. Glimmer of hope?
We are also full-swing on soaps and I am loving the Cal Ben's products. They just feel good on my skin. I hope they help Sam too.
Oh and on top of all that Sam is also on Dr. Pagano's diet for Healing Psoriasis which some eczema sufferers have had success with - probably because it eliminates almost every possible thing anyone could be reacting to. Let's see, the rules are no dairy, no eggs, no citrus fruits, no strawberries, tomatoes, nightshades (potatoes, peppers, parika, onions), hot spices, refined flour or sugar, junk food, fried or greasy food, processed food, beef or processed meats. Phew! And for Sam specifically we have added no nuts and no wheat. I know it sounds like he doesn't eat but actually I think he eats quite well. Lots of rice, beans, avacado, fish, chicken, goat yogurt, fruits and green smoothies.
This eczema stuff is serious business folks!
That's the update for now.