Our first run-in with a skin infection, which is supposed to be very common for individuals with Netherton's Syndrome, was last November. The skin culture showed two different types of Staph on her skin and it was obvious that something was not right. She was in agonizing pain, wouldn't let anyone touch her, hug her, pick her up, even pulling down her pants to use the potty was too painful. The infection started on her legs, at least that's where I first noticed the discoloration and bumpy appearance, but soon began showing up on her torso, back, and arms.
The last time it was most likely contracted from a dog with a staph infected wound we had been around. I say most likely because it is VERY rare for a human to be infected from canine staph. A google search, which believe me isn't always accurate, gives many reasons why humans don't contract staph from dogs. The first and most important one is that humans have a skin barrier. Your skin keeps harmful bacteria out of your body, and since staph is not airborne it doesn't get in through your nose or mouth. The rare occasions are when humans have an open wound around the infected animal. EmmaLee doesn't have this skin barrier. She is that rare exception when staph becomes contagious from dogs through her open skin. Now, I'm not a doctor...or even an expert on infections and types of bacteria...but I know more about my daughter than any professional ever will. I don't claim to be smarter than them, just more intuitive to my child's needs... "a mother's intuition" sums it up. Granted, there is no proof nor evidence that the last infection came from that dog,... but I just feel it. It makes sense. The only logical source for the infection. Coincidence? No. Maybe in these circumstances it is normal human behavior to find something to blame for someone's pain and suffering,...that's fine. I'll admit I just need to make something responsible for causing this trauma in our lives. If I have nothing to explain this, how will I ever know when or how it might occur again?
It has. Saturday night EmmaLee was in so much pain that I took her to the E.R. I think it was quite easy to diagnose this time since we now knew what a skin infection looks like, feels like (to her) and it's course of action. It started hurting several days before. I knew something was happening, and her skin was different than normal (for her). I feel so bad because I am the type of mom who says, "quit crying", "just get up and walk" (even when it hurts), and "okay, if you won't let me help, do it yourself". Yes, bad mom. I just know that the second I feel for her, really understand that she is in unbearable pain, I can't hold it all together anymore. I've felt like a wreck these past few days, puffy eyes and always on the verge of tears. I can't stand to see my baby hurting like this. We were changing her clothes to go to the hospital and she said something that just broke my heart. She says through sobs "I can't believe this is happening to me. I can't handle this." Yes I know... me either. Just writing about it makes me cry again.
Anyways, we got her on some antibiotics which seem to be working already. She still hurts, but she's not crying. She's tough. I hope I am helping her become a strong individual, but it sure feels wrong sometimes. I don't let her feel bad for herself, or make excuses why she needs special preference. Don't misunderstand, I love my daughter more than anything, but I don't want her to become someone who feels like they were cheated in life and can never be happy or have a normal life. I want her to understand her uniqueness and then get over it, not dwell on her differences and wish for better things. Acceptance, that's what it is. I want her to accept it, and move on. I'm sad to admit, but it took me a long time to accept our situation. Trust me, dwelling on why things happened this way won't change anything. Wishing for things to be different, leads to disappointment and anger. I love her and I have to be strong for her, even though it's hard for me.
Sorry for my random train of thought, I just needed to get it all out. I'm sure she'll be better in a few more days and back to her usual silly self again.
Oh, and she now wears glasses. At first I was apprehensive about the whole thing. I mean, doesn't she have enough to deal with without adding this? But I want her to have good vision, and now that she's been wearing them for a couple of weeks I can't imagine her not having them. She's just so darn cute. Anyways, it seems like glasses are becoming so commonplace nowadays that it hasn't been an issue even once. I remember when I was in school, yeah I say that like I'm old :-), and kids were just plain cruel to kids in glasses. I guess we will see what the school year brings, but for now hopefully we can get past this infection and just enjoy our beautiful Alaskan summer... except for that darn rain! Lol.