Monday, August 6, 2012


Rachel is our sweet, little girl. Well, sweet may not be the best way to describe Rachel. She's a precocious, mischievous two and a half year old, and my mother refers to her as our "pot-stirrer." Rachel loves to pick at her siblings: she inserts herself between Daniel and the television so he can't see it; she steals Sarah Beth's doll as soon as she puts it down; and we catch her sitting on Mary frequently. All of this said, there's not a mean bone in Rachel's body. She can't seem to help it. (Yes, we do discipline her when necessary.) And Rachel walks through our house and her life with a smile on her face, a song on her lips, and a dance in her step.

When we returned from our beach trip, we noticed that Rachel had pink cheeks. We figured she had just gotten too much sun and didn't worry about it. Two weeks later, however, when her cheeks were still pink, we reconsidered. And we found a few more "spots:" some of her fingernail beds were red, inflamed, and extremely painful; she had a rash on her knees and elbows; and a bug bite on her toe wasn't healing like it should. None of these things were worrisome in and of themselves, but all together, we were concerned. So I took her to the doctor who ordered some lab work.

Most of Rachel's lab work was normal except that her ANA was elevated. (ANA is basically a nonspecific marker for an autoimmune disease.) Our doctor got her an appointment at a nearby teaching hospital, but the soonest they could see her was the end of August. (At this point, we were in the middle of June, so that was a good bit of time away.)

We waited patiently until Rachel developed another rash last week, this time on her arm. Thankfully, our doctor had recently seen this same thing in another of her patients, so she was able to diagnose it quickly: lichen striatus. This skin rash looks much worse than it really is; topical steroids can help, but there's really no other treatment. It doesn't usually itch or hurt, and Rachel wasn't bothered by it at all. However, whatever Rachel had was getting worse and affecting her more. Our doctor called around and got Rachel another appointment at a different hospital, a children's hospital, that's a little further away.

We took Rachel for this appointment on Wednesday last week, and the doctor there immediately knew what she had: juvenile dermatomyositis. Basically, this rare, autoimmune disease attacks blood vessels and causes them to become inflamed. This inflammation makes the skin and muscles become inflamed. It can start with a skin rash, like Rachel did; but some children are not diagnosed until their muscles are so affected that they cannot even stand up. Treatment involves high dose steroids for quite a while. Children are usually photosensitive, and poor Rachel loves to play outside. Usually, there is a "trigger," and we think the trip to the beach was that trigger.

Thankfully, we seem to have caught Rachel's early enough that her muscles aren't too involved yet. John is taking her for an MRI this morning to see how much her muscles are affected. Then we have an appointment on Wednesday to discuss treatment.

We covet your prayers for Rachel and for us as we navigate this disease and its treatment. Please pray:
  • first and foremost, that God would be glorified throughout this process. Nothing, nothing happens without His approval, and we know without a doubt that His hand is on Rachel.
  • for wisdom for our doctor as he treats Rachel. We want to be as aggressive as we need to be to nip this thing in the bud.
  • that Rachel would continue to be our happy girl, that she would deal as well as possible with all of this confusion.
  • for wisdom for John and me as we care for Rachel and our other three children. The hospital is over an hour away, and it's going to be hard juggling all of our children, especially since Mary is still breastfeeding.
  • that the treatment, once it's started, would work quickly.
This whole thing is surreal to me. We have our happy, smiley little girl, and nothing seems to be wrong with her except for a rash in a few places. However, there is an insidious disease process going on inside her body that we must stop before it becomes debilitating.

Have you gone through anything like this before? Do you have any advice for us newbies?


Tracey said...

We'll certainly be praying for Rachel and your family! I'm thankful that they seem to have caught this early and trust that God will continue to lead the doctors and you and your husband as you make decisions regarding treatment.

Nikki said...

Tracey, thank you for your prayers. We can certainly use them right now.

Ben and Courtney Payne said...

I must say that I have never read a blog that has such vivid detail of a child and a diagnosis~ We have posted your prayer request on our cabinet and continue to add additional prayers to your already formed list. Thank you so much for taking the time to inform us of your needs and plans! PLEASE know that we can jump in our car and be there within the time it takes to get from GA to FL without blinking an eye~ Also know that we are praying without ceasing and that we want to walk with y'all through every step and support your every decision. We will continue to post updates when updates are delivered and promise to glorify God in every moment! We love y'all~ Ben, Courtney, Trevor, and Madyson

Charity said...

So glad you caught it early!! I hope the treatment is effective! I'll pray for you all.

Nikki said...

Charity, thank you for your prayers!

aurie good said...

Poor little one. I'm so glad that the doctor was able to see her and make a diagnosis - and that you are able to get in for an MRI quickly. Praying for you and your family. How scary!

Nikki said...

Aurie, it is scary, especially knowing that it could have been much, much worse if we hadn't caught it this early. Thank you for your prayers.

Nikki said...

We will be praying for little Rachel. Thank you for posting about this s I have not ever heard of it before and it helps us to know how to pray.

Nikki said...

Thanks, Nikki, for your prayers. I had not heard of this disease before, either, but I'm learning a lot very quickly!