Little Things I Thank GOD for

Little Sprinkles I Thank God For

It’s amazing the extra protection you get from wearing a hat and the right kind of sunscreen. When you learn that sun exposure is harming your child, you begin to think about every time the UVA and UVB rays reach your child’s skin.  You think about the times you are good at applying sunscreen and all the times you neglected it. The more I think about it, I have to thank GOD for a few things that protected my child. 

1. The daycare my son attends has requested sunscreen as a supply for a few years and applies it before outdoor playtime. 

2. My husband has always taken my vehicles to be tinted with UVA and UVB protective tint.  

3. Three days before I learned my son might have JDM, I was told he had psoriasis.  I learned that it’s a good idea to get extra sun if you have psoriasis.  I took my son to the local water park that weekend, thinking it would be good for him. That morning, a voice inside me (I believe it was GOD) continued to tell me to put his long sleeve water shirt on. I found his old water shirt from last season and put it on him. We used a lot of sunscreen that day.

We are not Alone

I’ve stayed up late, unable to sleep, searching the internet for information about juvenile dermatomyositis over the past few weeks.  I ran across the CureJDM Website.  It was what I needed.  There are people advocating to find a cure.  There are resources, links to blogs, videos, a community, stories, fund raisers and events.  I even found a book, Myositis and YOU.  I ordered it right away.  FYI, it was about 400 pages long.  I made it through all of the chapters that applied to us pretty quick. I want to continue to learn more and spread awareness.  

I think about what may have happened if our dermatologist didn’t recognize my son’s hand rashes as a pretty good sign of JDM.  After all, his pediatrician seemed to believe eczema was what all my fuss was about.  I have read so many stories about children who had signs for up to 2 years before learning it was JDM.  We had no idea for about 7 months. Mean while, I had no idea the sunny places he loved to play beamed harmful rays on my baby making him sick.  

I joined the CureJDM Community that night.  With such a rare disease, I did cross my fingers and search for someone who lived in the same city as we do. Would you believe it?  I found another Mom to connect with.  I even found events planned across the United States to bring families and children living with JDM together.  

Even more amazing, a friend contacted me the other day to let me know that one of her family members was diagnosed with JDM at 3 and is now a healthy 20 year old in remission.  This gives me hope.

Things have been a little hectic. I can’t wait to meet these people.  It really does help to know that there are people I can reach out to. With so much uncertainty, I’m thankful for the little sprinkles of hope and the people God has placed in my path recently.

Just the Beginning

I'm starting this blog to document and share a Ethan's story, it's likely to be a Juvenile Dermatomyositis story.  My hope is that this won't be as scary as I'm imagining. My hope is that this will be a short lived blog and we'll find out this is no big deal.  The truth is, I know deep down inside, this is exactly what my son has.

This story begins with a healthy baby boy.  Now that I look back, there were signs and I just didn't know any better.

Ethan is 3yo and has had rashes on his knees, elbows, and joints of his hands for some time now.  They would turn red and then back to a normal skin color.  I never knew why or what was causing it.  On his three year physical, his rashes were not red and we were told he had eczema, his pediatrician didn't seem concerned.  I accepted it and we made sure to apply cream and make sure to keep his skin moisturized.  Months passed, his day care teacher noticed and pointed out his rashy hands.  We knew no one could catch it, no one in the family had it. I held his little hands often and nothing happened to me. Some days a teacher at daycare would let me know his eyes became very puffy earlier in the day and the skin turned red.  He has allergies, not to worry, we began giving him allergy medicine daily.  After 3 weeks, nothing changed.  I began worrying he was allergic to our dog's hair or something he was eating often.  The rashes were not red every day.  His eyes usually looked better in the morning.

Last week, we finally made our first trip to the dermatologist.  Our Dr. took photos of all of the rashes on his joints and a photograph of his eyes.  He let us know that it was psoriasis. Psoriasis didn't explain his eyes.

I began researching.  You know, extra sun is good for someone with psoriasis.  I started reading that kids can have arthritic psoriasis and thinking, that may be why it's a fight to make Ethan walk up the stairs.  Every night, I tell him to walk up the stairs for bedtime and every night he asks me to carry him because his legs hurt.  Every night, it takes us FOREVER to make it up the stairs.  I was patient, supportive, we would make it a game and race slowly so he could win.  I didn't want to baby him too much, my back was killing me from carrying him so much, and he's 3.  He can climb stairs.  I started to think he may have arthritis.

4 days later, I received a phone call from our dermatologist.  He didn't want to wait for the 3 week follow up to tell me he had been looking at the photos and consulting with another dermatologist. He let me know that he believed Ethan had a very rare autoimmune disease, juvenile dermatomyositis.  We began talking about the skin symptoms. We began talking about the muscular symptoms. I began googling images while we talked.  I knew this was it.  I had searched rashes for months and could never find anything that looked like the rashes my son had on his hands.  The pictures of rashes I saw on hands looked exactly like my son's. 

My dermatologist took this very seriously.  He packed me with reading material, prepped me for the next phases of testing and made sure I understood Ethan needed further testing, a pediatric rheumatologist and a team of other doctors to be diagnosed and begin treatment.  I was told to get started ASAP.  Most importantly, I learned that the sun and uv light has been Ethan's enemy. 

As soon as I  left that lunch appt.  I found myself making an appointment with my son's pediatrician for the next available slot.  Needless to say, I think the office staff thought I was crazy with my packet of info and a possible diagnosis that I wanted tested.  He looked at Ethan's eyes, mouth palate, and rashes and said, it looks like it is juvenile dermatomyositis and ordered blood work.  Now I wait and research.

Juvenile dermatomyositis is a rare autoimmune disease of the skin and muscles that could be fatal.  Antibodies that are suppose to protect you from infection actually attack healthy muscle and skin, causing the visible skin symptoms, muscle pain and weakness.  You cannot catch it and there is not cure.  Treatment can put this disease into remission.  Juvenile dermatomyositis can occur in 2-3 children in a million. What can I say, Ethan has always been 1 in a million in my mind.