Gabe started topical steroid withdrawal in mid-February of this year so he is 4 months in.
The bright red skin of the first two months has faded and now it just looks like he has horrible eczema/was in a car crash. The areas that still look really awful are where we applied steroids the most and longest- wrists, feet, ankles and legs. His face is flaring though we never really applied steroids and he never had eczema there.
His energy levels are still maybe 35% of what they used to be. He still spends a lot of time sitting in his favorite spot, the recliner. He is able to be active and enjoy some quality of life thanks to some supplements we do everyday.
Right now what is really helping him is astaxanthin. It’s a super potent antioxidant that is reportedly 6,000 times more powerful than vitamin C!! I carry him out of bed in the morning and after breakfast he chomps up a 12 mg capsule of astaxanthin and within 10 minutes he is feeling 80% better and is able to get up and run around and be a normal kid. His mouth is perpetually stained orange but it works!! Astaxanthin is a naturally occurring antioxidant found in red algae (and sea food). It’s what makes flamingoes pink!
We still give him CBD oil (yes, from marijuana) when his pain and anxiety levels are very high. We give him 3-4 drops and he holds it in his mouth for 30 seconds before swallowing. It really helps him and the benefits go behind pain relief.
We also give him detox baths every other day. Epsom salts, dead sea salts, lavender oil and sometimes a bit of bentonite clay. He likes the water very hot and even though it usually stings at first, he never wants to get out. It’s the only place he doesn’t feel pain or itchiness.
Gabe also take probiotics and drinks a lot of kombucha. He is constantly asking for fruit so we try to stay stocked up.
His sleep is still a nightly struggle. So 1-2 times a week we give him 10 mg of hydroxinine to help him get some uninterrupted sleep. We get a break and he gets to sleep through the night without shredding up his skin.
I just ordered liviaone topical probiotic spray and I am pretty excited to try it out. I really think it will help Gabe heal because of so much of what he’s been through (similar to most people with eczema/TSW) destroy good bacteria on the skin- the steroids, the antibiotics, and bleach baths…. that I really feel he will be able to heal much more quickly with the introduction of healthy bacteria to his skin.
What I’ve tried that hasn’t been successful-
A high grade sodium bicarbonate (baking soda). There is a lot of buzz about safe soda helping people heal very quickly on the TSW pages. Problem is, this stuff is super expensive and hard to get. I tried what seemed to be a similar alternative but without success. I haven’t ruled out safe soda but it’d be painful to spend $60+ on a small contained of baking soda.
Essential oils. I’m a huge user of them. I’ve used them near daily for the past four years. I just can’t put them on Gabe because his skin is so sensitive that they make him worse. A couple drops in the tub is ok, applied topically just seems to be too much.
Homeopathy. Granted we went right in the beginning and we were exhausted and overwhelmed. We left with like 20 supplements all with complex directions. Half of them were pills that he couldn’t even swallow. It was basically a waste of $500. It probably would have worked better later on in his treatment and if it was more simplistic and doable.