Oliver's Rash

Pray for Ollie. Pray for all of us, actually.

A little more than 2 weeks ago, Oliver developed a pretty bad rash down the backs of both his legs. He has had sensitive skin his whole life so we are used to diaper rash and eczema and dry skin, but this was going to a whole new level. Of course we have no insurance now so we just waited it out and let the rash run it's course. It was a rough week or so but by day 8, things had pretty much cleared up. I was relieved for his sake and glad to get on with regular life. On our way down to the Bay Area for a family wedding, I noticed 2 little sores under Oliver's right arm, near his armpit. Hmmm....weird, I thought to myself.

The next day, the sores had grown and now there were a few more scattered under his armpit.
More "hmmmmm" and now making me a little nervous.

By the time we made it to the clinic on Monday, he had probably 20 sores on his thighs, trunk and now in both armpits. I was beginning to panic and found myself afraid to look at his body each morning to see that not only had things not improved, but had worsened. At the clinic we were told that we would probably have to wait for hours with no guarantee that we would even be seen...Grrrrr. So we arranged to come first thing the next morning- new sores and all.
I was hoping that the doctor would take one look at my poor baby boy and say with lots of confidence "Oh, I know what this is!! Here, take this and it should clear right up!" But he didn't.
No, in fact, he said, "Hmmmm...I don't think I have ever seen this before" and "If it is what I think it is, it is the worse case that I have ever seen!" and then he went to get his book to find out more. As he thumbed through the pages he found something called Pityriasis Lichenoid and then read aloud to Sean and I, "rare autoimmune disease, no known cause, no cure and no reliable treatment options. Pops up in crops and may take months to years to fully resolve". He wrote down the name of the disease on a napkin, handed it to me and said to look it up at home.
Thanks.

So, then I did the one thing that no parent should do but that we will all do eventually, and I looked up Pityriasis Lichenoid on the internet. No fun at all. Lots of fear. Lots of tears as I read stories of parents whose kids were embarrassed or made fun of because of the open sores all over their bodies, people who have spent years feeling depressed and worthless because of the discomfort and shame of the disease and very few stories of people who have successfully been able to treat the disease. I have never felt so hopeless. Sigh.

Thankfully, my mom and dad offered to pay for us to take Ollie to a real dermatologist and she was much more calm about the whole thing, although she still has no idea what is going on. She did say right off the bat that she did not think that this was pityriasis lichenoid which was a huge answer to prayer. They were able to take 2 biopsies so now we are just waiting for the results. In the meantime, we are just taking things one hour at a time. Oliver seems to be most uncomfortable at night and has been waking up in pain and itchy almost every hour. As any parent knows, it is just awful to watch your child in pain and know that you cannot help them. So, I just lay with him and sing songs and pray.

So, it's been a long week. I feel like I have a knot in my stomach all the time. The worst part is that because of his sores, I have no way of really holding my poor little guy. Even picking him up to put him on the potty or to wash his hands is too painful for him. I had to put a stool by the side of his bed because it was too painful for him to hoist himself up on it. It is so hard to see my typically active little boy walking around on his tiptoes with his arms out at his sides because of the sores in his armpits. I know that it is not life treatening but, for the last few weeks it is has been very life changing. I am trying to only worry about one day at a time but it is very hard not to think that this could possibly go on and on for months. Looking at him makes it hard to think about anything else.

We were able to get a topical steroid from the dermatologist so at least it feels like I can do something. She wants to see us again in a week so I thought that I would take some pictures to document. They are not pretty pictures so if you are squeemish just don't scroll down. But please, please pray for healing and rest. I know that my God is more powerful than any disease and that no matter how little information there is about this condition, it does not change the fact that Oliver's life is in God's hands. Thank you for your prayers.

These pictures are from last 3 days ago.

And these pictures are from today. Some of the blisters are drying out but there are new ones coming up. He even has 2 on his face :(

I will post an update as things go along but please remember us in your prayers.