We need to talk about the three things that are driving us the craziest right now: shedding, oozing and sweating. We have been in a constant battle with the shedding from pretty early on. The oozing started a little later but seems to want to hang on for dear life at certain spots. The sweating is fairly new and is just plain annoying.
SHEDDING: Shedding, flaking, peeling or molting are our nemesis. Since the beginning of Topical Steroid Withdrawal my poor daughter has been losing so much skin that we have to vacuum constantly. The shedding has gotten a little better but I still have to vacuum daily. We can not seem to stop the shedding with any oils, ointments, creams, etc. so these are the things that I do to manage the excessive amounts of skin that are all over my house.
CLOTHES – Never, and I mean NEVER wear black out of the house. All black (or dark) clothes are only to be worn when you know you will not leave the house and no one is coming over. We try to stick to light colors so that you can not see all the dead skin that has come off. Also, I shake all her clothes out the window before putting them in the laundry. It makes it so much easier to keep my washing machine free from all that debris.
BEDDING- I change my daughters sheets daily. I shake the sheets out the window too. I figure the more skin I get out of the house, the better. I keep 3 sets of sheets on her bed. It streamlines the process. Her bed is like a layer cake. 1 mattress protector, 1 fitted sheet, 1 flat sheet, 1 mattress protector, 1 fitted sheet, 1 flat sheet, 1 big towel (I only had 2 mattress protectors), 1 fitted sheet, 1 flat sheet. So every morning after my daughter gets out of bed I pull off the top sheet, fitted sheet and mattress protector (or towel), shake them out the window and I have a fresh layer underneath. I just put her quilt back on the bed.
COUCH- My daughter lives on the couch. Since starting TSW the couch is where her little butt sits from the moment she gets up until she goes to bed. I keep a full size fitted sheet on my couch to protect it. We plan on replacing the couch when all this is over but for now the sheet is a huge help. At the end of the day I pull off the sheet and shake it out the window, stick it in the hamper and put on a new fitted sheet. Between the clothes and the sheets that we shake out the window, it looks like it has snowed only on our house.
FLOORS – At the beginning of TSW I was vacuuming several times a day to get all the skin off the floors. At 7 months we are down to using the vacuum daily. If I don’t get the skin up our dog licks it up off the floor, which is pretty gross and drives my daughter crazy.
OOZING: Oozing or seeping is probably one of the most disgusting parts of TSW. It smells bad, makes your clothes and sheets smell bad, makes your whole house smell bad. Your clothes stick to oozy spots. The ooze beads and drips in areas that aren’t covered by clothes, like your face. Most importantly it feels bad. Luckily my daughter’s oozy spots are now only small spots but they still create the same problems.
STOPPING THE OOZE: There are only a couple of things we used for ooze that worked for us – Domeboro Solution (or Burrows Solution) and Desitin. We soaked washclothes in Domeboro mixed with water and wrapped them around her bad oozy spots (feet and wrists) for 15 minutes. For her face we used Desitin. We only did this if she was home. She no longer lets me do either of these things but they did seem to help at the time.
FUNKY CLOTHES: As I noted above, I shake all my daughter’s clothes out the window before they go in the hamper. It took some trial and error (and lots of advice from others who have gone through this) but I finally found the best way to get the odor out of her clothes. I wash her clothes twice. First I wash them in hot water and vinegar. I buy a giant jug of white vinegar at BJs. I use at least 1 cup, more depending on the size of the load. Once that is done, I wash her clothes again with free and clear detergent and at least a cup of baking soda (thanks Melissa). This has seemed to help with the odor tremendously.
STINKY SHEETS: Her sheets don’t smell quite as bad as her clothes. They just have a hint of the odor. I am probably the only one who notices it because I stupidly stick my nose right in there every morning. You would think I would learn! I blame it on lack of sleep. So, again I shake the sheets out the window then into the hamper. I only wash her sheets once (this includes the sheets from the couch). I don’t use the vinegar on the sheets because the smell isn’t so bad. I wash them with free and clear detergent and about a half a cup of baking soda, They come out stank free!
SMELLY HOUSE: Days when she is pretty oozy and stuck inside all day, the house gets a slight rancid smell. To get rid of the smell we opened the windows. Sounds simple, doesn’t it? Well, it is tricky when your child is freezing cold and air hurts her skin. So, we do the window shuffle. We open her bedroom window as soon as she is out of bed and on the couch. This stays open all day unless it is pouring rain. When she goes to bed at night the living room, dining room and kitchen windows get opened and stay that way all night. She rarely goes anywhere else in the house so problem solved – no odor.
SWEATING: Sweating is actually a good thing. It means the adrenal system is healing (or at least that is what I have read and believe). My daughter never sweat in her life so the first time she was sweating I was jumping for joy. She was less than thrilled. Unfortunately with sweat comes stinging, itching, wet clothes and sheets.
SWEAT STING: When the sweat touches my daughter’s skin, it really stings. The only thing that seems to help is ice. It isn’t a miracle cure but it does help a little. Sometimes if it is really bad she will ask for something for the pain. I give her Tylenol or Motrin.
THE SWEATY ITCH: From what I am told this itch is different from the deep, to the bone, itch. My daughter says that this is more annoying and the deep itch really drives you crazy. Again we use ice. There really isn’t anything else we can do. Baths help others but she says the bath makes her itchier.
WET CLOTHES AND SHEETS: Change your clothes frequently and wash sheets regularly. There really isn’t any good advice for me to give on this.
So that is all I have to say about the 3 things that torture my poor child. My advice is more about managing the home since I can’t seem to do a whole lot to make her feel any better. One day this will all be a distant memory for her but I think it will stay with me longer, like post traumatic stress syndrome.