This was the case with our oldest child. Grant was diagnosed with eczema when he was just a baby. Patches of skin would become rough, inflamed and very itchy. It's is actually quite common in young children and most outgrow the condition by the time they are two years of age. Yet Grant still suffered with it when he was four. In fact, it was getting worse.
He would have severe breakouts that centered on his face and neck, hands and feet, inside his elbows, and behind his knees. He would scratch until he bled. Most often, he wouldn't even realize that he was doing it.
His pediatrician suggested that we see a dermatologist. It was then that we learned that "there is no cure" for eczema and that we "had to learn to live with it." Grant was prescribed stronger ointments and we were sent on our way.
After trying several different medications with no improvement, we realized that his skin was actually getting worse. We saw a second dermatologist, but were greeted with the same results. "There is no cure" for eczema.
By this point much of Grant's body was covered in the itchy rash, but then a new symptom presented itself. The palms of his hands and the soles of his feet would breakout in huge water blisters making walking nearly impossible. He was in such agony. We were told that this too was a form of eczema.
During this time, my husband and I were working full-time, but Grant's condition was weighing hard on us. The workers at the childcare center seemed annoyed to have to deal with Grant's special situation. He couldn't take field trips to the pool because the chlorine burned like acid. And instead of spending all afternoon on the playground with the other children, he would have to sit inside. The Georgia heat and humidity was simply too much for him as sweating only intensified the discomfort. And to add to his humiliation, the workers began referring to Grant as "Eczema Boy."
After much prayer, we decided that instead to searching for another childcare facility, I would quit my job and care for him at home. He was constantly battling skin infections and a daycare center probably wasn't the cleanest place for him to be. This created great financial stress for us, but could we really put a price on our child's health?
Once home, we had hoped that we would see an improvement. Instead we were faced with yet another symptom. This was when his condition took a serious turn for the worse. His skin began peeling off in sheets. It was a bit like that of someone who had spent too much time in the sun, but for Grant the new skin underneath was not yet mature. His entire body was one large open wound. It was as if he were a burn victim. By this point, he could no longer move his joints without the skin breaking open and bleeding.
Our once very active and energetic little boy was suddenly bedridden. His skin constantly swollen and inflamed with regular infections and even boils. We could see our child slipping away from us.
So was this it? Wasn't there something else that could be done? Were we going to have to watch our child die believing that there were no other options?
We began doing homework. We went online and searched for anything we could find about such severe eczema. We looked into alternative treatments and home remedies. We were willing to try ANYTHING. We also looked for support groups though no one had ever experienced anything remotely as severe as Grant.
We then began taking action. We removed all carpet and fabric furniture from our home because we knew that he was allergic to dust. This produced some immediate results. The skin was not completely healed, but he could soon walk again. With this, we knew it was a matter of finding the things around him that triggered the condition. We finally had hope again. Even when he experienced severe relapses, we did not get discouraged. We had to stay strong.
We then experimented with diet. Was he allergic to milk? Or was it soy? Actually we learned that he was extremely allergic to EGGS. This meant reading every package label because eggs are in so many things we eat everyday. He could no longer have cakes or cookies, french toast, muffins, pancakes. Even some breads, pastas, and ice creams contain eggs, but within a few weeks of implementing an egg-free diet, his skin made a dramatic turn around. The improvement this time was the best yet, but we weren't done.
Phototherapy was one of the alternative treatments we had researched. It was something that I had inquired about with one of the previous dermatologists only to have the doctor's assistant laugh at me for suggesting such a thing. This simply intensified my search to find a physician who was just as willing as I was to try anything in hopes of improving my son's condition.
It was dermatologist #4 that offered this final piece to the puzzle. The phototherapy exposed Grant to intense UVB lights. We are all taught that prolonged exposure to UV rays can cause skin cancer down the road, but this was a risk we had to take. It was obvious to us that his autoimmune disorder was causing such damage to his skin that he may end up with skin cancer anyway. We had to try.
In addition to finally finding just the right topical ointments and oral antihistamine, the phototherapy was just what Grant needed. The prescriptions helped to reduce breakouts, but it was the UV lights that actually helped to heal the damage that was already present. It took six months of therapy twice a week to heal his skin so completely that the treatments were no longer necessary. And for the first time since he was an infant, Grant's skin was soft and smooth.
It took two and a half years, five doctors, and a lot of trial and error, but we finally discovered how to treat Grant's disorder. We believe that his recovery was nothing short of a miracle and that we would have lost him years ago had we believed that nothing else could be done. No, there is no cure for Grant's autoimmune disorder, and he will always have to treat it, but by refusing to give up, we were able to find a therapy that worked and we now have our very active little boy once again.
At seven-years-old, Grant ran a 5k race on a day with unexpected snow flurries.
What an accomplishment for a child who was once bedridden?!
What an accomplishment for a child who was once bedridden?!
Today Grant is nine-years-old. He has a few light scars, but looking at him now,
no one would ever know that he was once so very sick.
He enjoys running and swimming - two things that were once impossible for him.
no one would ever know that he was once so very sick.
He enjoys running and swimming - two things that were once impossible for him.
Now Let's Fast Forward Two Years to 2011
In the summer of 2009, my husband lost his job and the health insurance that came with it. We paid for the prescriptions out of pocket, but we could no longer afford the phototherapy. And Grant's skin looked okay for a while.... But over time his skin began to slowly deteriorate once again.
We have since gotten new health insurance, but NONE of the dermatologists who accept this insurance offer phototherapy. Not one. And Grant's skin has become severely broken out. He really needs the phototherapy to strengthen the skin so it can heal.
Grant is now eleven years old and extremely self-conscious about the appearance of his skin. I asked him to let me take a few photos to document his current breakout for the insurance company. He agreed, but wants me to delete them once they are no longer needed. He's afraid that his friends will see them and this would be very embarrassing to him. So even though it's still very warm, he refuses to wear shorts.
I am now in the process of trying to convince the insurance company that phototherapy is proven to work for him and that they should provide the equipment for him to use in our home. I know it's a long shot, but I have to try. It's very difficult to see my child this way, especially knowing exactly what he needs to get better.
And yet through it all, Grant is one of the happiest kids I know. Always smiling. Trying to make everyone laugh. Doing nice things for others. He really doesn't deserve to be in such pain everyday. I pray that we can find an answer to all of this very soon.
Three Days Later
Just three days since that last post, and Grant's dishydrotic eczema has been aggravated. His hands and feet are now covered in water blisters. Wearing shoes is impossible so I've begun the paperwork to have him on homebound school until his condition improves.
