Wednesday, October 24, 2012

This is long...Sorry...The latest on Will's Skin Conditions

It's taking a lot of effort to write this post.
I think I've thought about this so much over the past few weeks, my brain is just weary from thinking about it.

Two weeks ago we met with a Pediatric Dermatologist.
At the time we knew for sure that Will had mollescum contagiosum.
It's a very common virus that kids catch from one another.
Will probably got it from a kid at church because that really his only exposure to other kids.
It causes little bumps all over their body.

Will probably had 100 bumps. It was terrible. Totally out of control. All over his torso, inner arms, it was just starting to spread to his face and legs. He would wake up at least three times a night itching and scratching.
By the time we saw the Pediatric Dermatologist the skin on the left side of his chest and under his left arm was absolutely raw. It was awful.
Hanging out at the doctor's office. His least favorite place!

Your body will eventually fight off the mollescum virus, it just takes a long time for the body to recognize the virus because it's just in the epidermis layer (the skin layer) of your body.
While you're waiting for your body to recognize the virus the only treatments are freezing the bumps off or having them cut off. That was out of the question for my little boy with 100 bumps. We tried some home remedies, we tried some herbal things, and several different products that people on the internet swear works. None of it worked for us.
This is a cell phone picture so it's not great but you can see the bumps on Will's left arm.
The pediatric dermatologist (PD) told us that the best thing to do was pick at the bumps. I had not done that to Will because it's painful and the poor boy has endured enough pain with his finger situation. I didn't want him to think his mommy was purposefully hurting him all the time. But the PD said to pick them and make them bleed and then the body will realize something is wrong and start to fight the virus on it's own.

That sounded like a bunch of baloney to me, but we tried it. Every night after bath time Ryan would hold Will down and I would squeeze a few of his bumps. Awful. And we would rub the poor boy down from head to toe with vaseline.

We also started some serious praying. Ryan & I would pray when we would lay Will down at night. I would pray for Will when I was putting Christian to bed and McKenna (who just randomly prays whenever she thinks of it...I love that) would pray "Dear Jesus, please take Will's bumps away."

The PD also diagnosed Will with severe ezcema. That totally caught me off guard because Will did not have any skin problems up until this point. But the PD felt like the itching and raw skin was a result of the ezcema, not the mollescum. The doctor thought the mollescum was spreading like crazy because of the ezcema. So they prescribed a steroid cream and literally 24 hours later his skin looked remarkably better.

Two weeks later: Any symptoms of ezcema are completely gone. The mollescum is drying up and disappearing. I would say it's 70% gone (and it could have taken up to 3 year to clear up). Once again we are seeing the Lord use doctor's and their wisdom to bring healing to our little boy.

To make a very long story short....Will's immediate skin issues are healing. I'm guessing that in two weeks there won't be any ezcema or mollescum symptoms left!!!

Onto the rest of the story.....

Will was also diagnosed with urticaria pigmentosa.
It's a skin disease that Will was born with.
There is no treatment.
It is not contagious (FYI: when someone shares a medical diagnosis..don't ever let the first words out of your mouth be "Can I catch it?" It's insensitive and hurtful).

Will basically has what look like fairly light colored large freckles all over his body.
To be exact, he has 17 of these spots.

Ignore the snot on his shirt :)
You can see two spots on his face in this picture.

They look like they're no big deal.
Oh, but they are.

There is an excessive amount of mast cells in his skin.
The cause for the excessive amount of mast cells is pretty complicated.
I would have to go to medical school to completely understand it. That's not gonna happen!

This disease usually peaks between the ages of 2 and 4. 
In severe cases children end up with hundreds of these spots.

Will literally has no symptoms of the disease other than the 17 spots on his body.

By looking back through pictures of Will's very well documented life, I figured out that he got his first spot when he was 8 months old. You can just barely see it in this picture.

From what I can tell, one month later he had three more spots. Look right behind his ear you can see a spot starting to grow.

The concern is that if he continues at this rate and gets 17 spots a year, by the time he goes to Kindergarten he will have close to 100 spots. That's very concerning.
 This is the first thing that any of my kids have ever dealt with that doesn't have an answer. There is no fix. There is not a prognosis. It's all unknown. This is a very rare disease that effects 1 in every 200,000 children. Very little research has been done. That makes me feel sick to my stomach. It makes me worry. Yes, I know that there are a million things that could be worse. I'm just sharing my heart. I love this sweet boy more than anything and hate the thought of the challenges this disease could present in his life.
If nothing else, this is teaching me to be faithful and disciplined in prayer. I pray about this every single day, most of the time multiple times a day. I have complete faith that the Lord can heal Will right now, I just pray and pray that he chooses to do it.

It would certainly be a blessing to me if you would pray for Will whenever you think of him. Pray that this disease stops progressing immediately and that no new spots form on his skin. Pray that he doesn't develop any of the internal or allergy issues that can be an issue with this disease.
I'm sure you would all agree that he is just the cutest thing ever...extra "freckles" and all!!


Anonymous said...

I agree that Will is the "cutest thing ever", but he also has the sweetest disposition of any child I've ever known. His sweet smile and gentle manner make him just precious. PopPop and I are totally in agreement with you for his complete healing. Thank you Jesus for touching this sweet boy!

Courtney said...

wow, judy.

we've had molescum. it's very common in kids from orphanages. and all my kids got it. to different degrees, but it's all getting better. praise God it's healing so quickly in Will!!

i will be praying for his other condition. the unknown can be so scary. praying for healing for him and peace for you!

Amber said...

Will definitely be praying for Will and you too!!

Katy said...

For whatever reason. God has chosen will to carry His story of the powerof prayer and healing! I will stand with you in prayer Judy and rejoice when Gods name is glorified as a result! Will is fearfully and wonderfully made after all!!

Anonymous said...

I will be praying for Will and his parents. Anna

Millicent said...

Oh Judy!!! I am so,so thankful that he is being healed from the Molluscum and Eczema!!!!!! After dealing with the first for so long, I know it's a huge relief! I'm believing that Jesus will heal him from the other skin troubles as well!!