In month 5 of Topical Steroid Withdrawal, things started to change a tiny bit for the better. I will not fool you by saying that things were great, or even good. Things sucked! However, they sucked a little less than the first 3 months.
The beginning of the 5th month was awful. My daughter only made it to school 3 days of the last 2 weeks of school because she was so tired. It was terrible but once school ended we were able to manage things a little better. She was happier when she could stay up late at night and sleep late the next day. I no longer had any time to myself at night but it was worth it. I would cuddle on the couch with her and watch movies or whatever silly show she wanted to watch. She also started to get a little energy back. She started going on the trampoline a few times a week and was able to do a little more than in the earlier months.
Her skin started to become less red. It was more pink now with large areas of super dry irritated areas. Most people flare and have periods of some calm in between. It wasn’t like that for my daughter. She was in a constant flare for about 4 months. Even after that she never really had a break from the flares but the flaring wasn’t all over her entire body anymore. The flares were covering about 80% of her body by month 5. It sounds horrible (and it was) but it was better than 100% of her body flaring, like before. You can see the difference in the color of her skin in the pictures below. Month 2 Month 5
Unfortunately my daughter was feeling sadder than when she was still in school. Her skin now burned when water touched it, which meant no swimming or surfing. She was already sad about taking a break from gymnastics and ice skating. It was just too much for her. She cried when she thought about the beach or the pool. It broke my heart and made me want to kick someone’s ass. I’m not sure whose ass though. I guess the doctors who kept prescribing this garbage even after we kept telling them that we didn’t think the topical steroids were working anymore.
Her hands started to really hurt her in month 4 and at the beginning of month 5 she still had to keep gloves on most of the time. Before this she wore the gloves occasionally, now she couldn’t stand to take them off. She even wore fingerless gloves to school a few times.
Her feet and ankles have been the worst area on her body and it continued to give her problems in the 5th month. She oozes on the top of her feet, her ankles and the lower part of her leg. The oozing areas are small but there are tons of them. Then it dries out and cracks.
Somewhere in the 5th month bath time became unbearable! What gave her some comfort in the earlier months now was torture. We had to run around the house closing all the windows before telling her that she had to take a bath for fear that someone would call Child Protection Services. She literally screamed and cried that she was scared and that it was going to hurt. Then when she got in the tub the screams got even worse. It sounded like we were beating her. It was awful! After 5 minutes or so she settled down but within 10 minutes she was begging me to let her come out. Baking soda is the only thing that helps the sting at all. We have tried apple cider vinegar, epsom salt (which I still use but only 1/4 cup now), several different natural oils and oats. 2 cups of baking soda seem to help a little but it is still a horror show.
The only products that we were using in Month 5 were Extra Virgin Organic Cold Pressed Coconut Oil, Organic Extra Virgin Olive Oil (occasionally), White Petroleum Jelly, David Hoskings Hypoallergenic Face and Body Balm http://www.hoskingspharmacy.com/baby-infant-face-rashes.htm and Miss Kitty Fantastico’s Goo http://misskittydefeatseczema.blogspot.com/2013/04/make-goo-not-war-homemade-moisturiser.html . We use the Face and Body Balm on my daughter’s face in the morning and in the evening. The coconut oil is used on any open areas to help fight infection. We use the petroleum jelly over the coconut oil on the feet and hands when they are really dry and cracked. Kitty’s Goo is used on any areas that aren’t cut open. Sometimes we use olive oil also. I keep a small spray bottle of olive oil in my bag so that I always have something with me.
So, that is about it for Month 5. Onto Month 6!