If that picture is painful to look at, I'm sorry. It's the reason I don't like to discuss Kylie's eczema... because it's too painful. And I haven't even snapped any pictures when it's out of control. Sometimes the red marks cover her whole body (excluding her face, thank goodness). That's too much for me, I don't want a picture of her skin when it reaches that point.
I finally decided to post just in case someone who reads this has some different options, opinions, suggestions or even questions. I know there are lots of kids who have this skin condition. It's not an unusual thing, so someone who reads this could possibly either help me out, ask me questions or just simply relate.
Kylie's been diagnosed with it ever since her two month doctor's appointment, so long before we stopped breastfeeding. My sister Rachel had it and STILL has it pretty bad, and she was breastfed for a year, so that helps me cope with the guilt that Kylie has it and wasn't breastfed for a whole year. She was breastfed up until 7 months when she refused to do it anymore. I have a feeling it was because I was one month pregnant with Eve and it didn't taste the same anymore. Besides, it's genetic and Jason and I both have a family member who has a severe case of eczema. For him, it's a cousin and for me, it's my sister. So that helps me deal with the guilt of not breastfeeding for a whole year.
There's a reason why I haven't wanted to make this post. It just makes me so sad to see her red marks that sometimes cover her entire body; to hear her make that terrible scratching sound even when her nails are cut short; to feel her sand papery like skin when I'm putting lotion or medicine all over her body. I remember hearing that same scratching sound every night growing up, since I shared a room with my sister who scratched her eczema every night before she could fall asleep. Eczema is not rare, so I would imagine most people know someone who has it to some degree. But for those of you who it, the scratching sound I'm describing is almost like a paper tearing sound. Or maybe imagine the sound it would make if you would run your fingernails hard against a piece of sandpaper. It just sounds painful.
Kylie thinks that people's wrists are called "owies" because she always has scratch marks on hers. If I tell her they are called "wrists," she just corrects me and says: "no mommy, they're owies." I especially can't stand it when I catch her whimpering and I ask what's wrong and her reply is: "My owies hurt. I need medicine." Yep, the word medicine has been part of her vocabulary for quite some time. We are constantly putting prescribed steroid cream on her. There is no cure for eczema, but it can be kept under control. Something else we have tried is bleach baths. We have heard about it from several different reliable sources and looked up the research on it before trying it. It is a very diluted bleach bath; the water is similar to pool water. Since it's so diluted, it's safe if the child drinks the water and safe if they get it in their eyes. It works because Eczema scratches can become infected with a type of staph bacteria, so the diluted bleach bath kill the germs to keep it from becoming infected. It's much better than keeping your child on antibiotics. Our doctor prescribed antibiotics for Kylie once because she was covered neck down in eczema wounds. It cleared up immediately, but everyone knows the danger of using antibiotics too often. Well, the bleach baths helped a lot at first. We were so happy. But once Winter came and the heaters were turned on, her skin became terrible looking again.
So now, we do Aveeno's oatmeal baths every once in a while. It does seem to soothe her skin a lot. The only problem is that the label says not to get the water in your child's eyes and to contact poison control if swallowed. So having Eve (who drinks bath water like it's kool-aid) in the oatmeal bath is out of the question. Eve loves baths and she would throw a fit if she saw her sister Kylie in the bath and she wasn't allowed to join her. So I can only give Kylie these types of baths when Eve is sleeping.
Those of you who have experience with eczema know that certain allergies "trigger" it. We haven't discovered any food, soap or fabric allergies that seem to make it worse. Our doctor finally gave us a recommendation to see a specialist at Children's Mercy, but the appointment isn't until mid-April. Hopefully we can find out more at that time. I do know that cow's milk allergy is pretty commonly associated with this skin condition. An interesting thing happened this week that made me wonder even more about the possibility of milk: Kylie started throwing up this week. She hasn't thrown up since she was literally 2 days old. She hasn't had a fever and she seems to be doing fine. Jason noticed that she was only throwing up when we were giving her milk to drink. I didn't believe him (I thought if milk was the problem, we would have noticed long before her second birthday) so I gave her some chocolate milk as a treat when we visited the Crown Center yesterday. Jason was not happy about that decision, but I thought that since it had been over 36 hours since she had thrown up, that she was over whatever it was. Well, I regretted my decision really quickly. We were shopping in the Crayola store when she lost her marbles all over the floor. Gross. She was so embarrassed, poor girl. I was embarrassed too, and those of you who know me know that it takes A LOT for that to happen. But it made me realize that maybe it was milk that was bothering her. So I did some more online research and I found out that she could be allergic to milk, which could have been triggering her eczema AND was causing her to start throwing up when it was in her system. So I'm taking her off milk, just to see what happens.
I'm very anxious to see that specialist in April. I have lots of questions.
EDIT/UPDATE: So Kylie is five now, and I'm doing a quick update on this post in case anyone is reading this later: The BEST thing we found out from the dermatologist at Children's Mercy hospital was... (drum roll please!)... vaseline! Just regular old petroleum jelly. Slather is on, especially after bathtime and it works. Seriously. Kylie's skin is so much better. Also we learned not to put any lotion on her, it will dry out her skin. The gel/oily stuff is the way to go because it locks in the moisture. We are now battling mostly with redness around her eyes, but the vaseline even helps that to some extent. They also put her on benadryl daily which helped a ton because it cut down on her itching, but I wasn't too fond of her being constantly on benadryl, so I've weaned her off and she now only takes it when she is really itchy. So I hope that helps someone out there with a similar problem! Also, she drinks milk all the time, I don't think it triggers anything. It really didn't do anything different when we took her off milk.