How we're doing

Everyone is asking, so I thought I should just write a blog post about it!

Our family has been struggling with some health issues for the past three weeks. Most notably Diana's eczema flared up again in a very serious way. One week it was pink eye for Liam, and then waiting to see if anyone else would get it. As soon as he was done with the antibiotic course for that, he came down with Group A Strep, complete with lack of appetite and a pretty high fever. We feared Matthew was going to come down with one or both illnesses because he was also acting very fussy and sad, but it turned out he was just pushing through 2-3 new teeth.

In the midst of all of that, I was feeling pretty overwhelmed with despair about Diana and I indulged in a Facebook post about our circumstances. After doing that I was overwhelmed again, but with love and encouragement. It was so touching! People dropped off chocolate for a stressed mom (angels, all of you!), gifts for the kids, and had lots of helpful suggestions about Diana. We were also able to FINALLY see a doctor a couple days after and get some tools to help get Diana some relief.

Here's what happened with her:

Diana's ankle Thursday night.

As usual, there was no warning Diana's eczema was going to go downhill. The only contributing factors we can think of are that she had a bit of a bad attitude and we went out to eat Chinese food, so she may have had some food grease on her hands. It was a Thursday, so I put the kids down for naps and Joseph went back to work. Diana started crying from her room and I went in to find she'd pretty severely scratched up her ankles and the tops of her feet. There were a lot of open spots, so I put on Neosporin and some band-aids. Soon after putting her to bed that night, she came out crying to show me that she'd scratched herself open AGAIN in the same area. She was having trouble walking because her feet were sore and stiff. The thing that concerned me was that there were small white bumps that I'd never seen before. I know Neosporin has some cocoa butter in it and since she's allergic to that, I hoped it was just a reaction to the Neosporin. I wrapped her feet in some gauze and tights and sent her back to bed.

 

Friday.

I thought for sure we wouldn't have any more problems because her feet seemed to be hurting more than itching. But of course I was wrong! The very next day at naptime she came to me crying again because she'd scratched herself. I applied Vaseline and more gauze.

We made it through most of the weekend without any more problems. By Sunday night, I noticed many more white bumps and was concerned they might be some unusual infection. Unfortunately, I took to Facebook to find an answer, where parents of other kids with eczema diagnosed Diana with everything from warts to MRSA, so obviously I didn't find any good information there.

Sunday night.

Sunday night.

Monday.

But it was Monday when things got really bad. She was starting to heal up, or maybe it was whatever the white bumps were, but she was really itchy and called to me from the bathroom around nap time. I was feeding Matthew, so I asked her to wait a couple minutes until I put him down and I walked in on this:

It was like a horror movie. I gasped and yelled "Diana!" and covered my mouth in shock. She was already distressed and when she saw my reaction just started screaming "I'm sorry! I'm sorry!" over and over again. She told me she thought I was angry at her. I tried to explain that I was very surprised and angry that she was so itchy that she would do this to herself. She didn't understand the distinction. But really, parents, if you walked in on your child tearing themselves to pieces, wouldn't it push you a little bit over the edge? When I cleaned it up, her ankles looked more like this:

Monday cleaned up.

Monday cleaned up.

 

Really, the only thing I knew to do was put Vaseline and gauze on and tape it up. Obviously this was very painful, especially as it started to heal a little under the dressing. Diana could walk a little on her tip-toes because it hurt to bend her foot. Mostly she sat and wouldn't walk at all. I tried to force her to walk a little bit just to keep things flexible but it hurt her a lot. 

Taking the dressings off was painful too because they stuck to the wounds, so we'd soak them in an epsom salt bath to soften things up and cleanse the area. You can't possibly imagine the amount of screaming that goes into mentally preparing, trying to persuade, and finally forcing a frightened and hurting child into exposing the most painful part of their body to certain pain in the name of helping them. It is to our neighbors' great credit that, despite three home births and many years of Diana screaming at the top of her lungs because of her hurting skin, they have never yet reported us to the authorities. It sounded to all the world like someone was being murdered. She would physically fight and yell "No, mommy, you're hurting me! Don't hurt me! Please! Let me take my leg out! Help me! Help me mommy! Please no!" That was probably some of my lowest times. The only thing that can possibly keep a parent mechanically doing something that is so obviously hurting and terrifying their child is the knowledge that it will be good for them in the end, but it is so difficult. And in the end we'd bandage her up again and beg her not to touch her ankles.

That was another confusing part of the whole episode. How do you deal with someone who is harming themselves? Sure, she's a child. The hallmark of being a child is a lack of impulse control. Certainly her problem is severe, because human beings don't just remove their skin unless there is a larger issue. But at some point it does become difficult not to become hardened and tell them "YOU did this! This is all your fault! Just stop doing it!" It was at once utterly heart-wrenching and also maddening. 

I called the dermatologist and the doctor's offices. We had an appointment to see her doctor that we'd made FIVE WEEKS prior, but it was still a week off and I didn't know what she'd do to herself in the meantime. I begged them, holding back tears, to see if they could find any time at all that week to see her. I told them she had removed all the skin from her ankles, that I was worried about infection, that I needed instructions on wound care, and the nearest time any of them could find was Thursday- three days away. So we took it and hoped we could keep her skin together for three days. We couldn't. Both Tuesday night and Wednesday night she woke us up at 5 AM screaming and scratching with blood running down her feet. More gauze and tape, more soaking her feet, more screaming, more sitting and crying because her feet hurt her all day and night but she just couldn't stop scratching them. At one point she was scratching and sobbing, "I just want God to heal me!" So I got down  and prayed with her and rubbed her feet and she stopped crying. Multiple times that week I'd go into a room and have a small tearful breakdown myself. It was rough for all of us. 

Thursday came and the dermatologist was little help. Oddly, he didn't even ask us to take off her bandages so he could see her ankles. He said there was definitely an infection exacerbating the problem and prescribed us an oral antibiotic. He also prescribed Elidel, a non-steroid ointment that's supposed to be good for children. UNfortunately, even going through insurance and using a coupon card they gave us, a tube was going to be $800. If it helped Diana's skin, obviously it would be worth a great amount to us, but since we don't know how it affects her, there's little incentive to pay that much money. He did give us a couple small samples and they appear to make her skin red and itchy, so I think we'll skip that one.

The next visit was to our family doctor who, as I've mentioned before, I adore. He really seems to listen and care about my kids and have new ideas based on recent research. I showed him the pictures of her skin throughout the week. He removed the gauze and looked at Diana's raw ankles. He was appropriately shocked and horrified and it was just relieving to have someone else know what we were feeling. His inclination was to hit her eczema hard. He told me I could use a full adult dose of antihistamine for her. In addition, he prescribed another antihistamine that tended to have sedative properties for nighttime. He prescribed a topical antibiotic to be taken in conjunction with the oral antibiotic, as well as a moderate steroid ointment (triamcinolone) and a strong steroid ointment (clobetasol). He gave us an entire box of non-stick pads to take home and put on her feet when we wrapped her up. Hallelujah! 

We had one setback that night, and it was completely my fault. I didn't put her in full footie pajamas and tape her up so she couldn't remove them. Instead I bandaged her and put her in tights which she removed in another late-night screaming/bleeding/scratching episode. Thankfully, that was our last one. 

It's now been five days since we saw the doctor and Diana's feet have healed up marvelously! Healthy new skin everywhere and hardly any open scratches at all. She's definitely still itchy, though, especially around the time the antihistamines wear off, so we're on high alert until her skin is less dry and that subsides. She's not allowed alone anywhere unless she's taped up in full footie pajamas until we're sure that she won't take the opportunity of a free and itchy 30 seconds to scratch herself. 

I have so appreciated people's thoughts, prayers, encouragement, and suggestions. Thank you to the people I texted in moments of despair and frustration who only had positive things to say, though I'm not sure that any of them actually read this long-winded blog. I realize that there are many more serious health problems we could be facing, and I'm thankful that the biggest challenge we face is so easily treatable and not actually life-threatening. Situations like these encourage me to get my prayer life and bible reading in order which leads to improvements in many areas of my life. And it's inspiring to watch Diana's complete faith that God listens to her and will heal her. She'll pray about almost anything at any time- from her eczema to her "pet" ladybugs to squished slugs on the sidewalk. 

So that's how we're doing these days! And now you know. We are SO done with being sick for weeks at a time. Bring on summer!