Excerpted from a presentation by Joanna Hamilton, at the 2010 National Eczema Association Patient Conference. Mrs. Wyoming 2009, Joanna shares her experiences as a parent of children with eczema. Joanna holds a B.A. in Child Development and Family Relations from Kentucky State University. She is a certified Early Childhood Special Education Teacher.
When it comes to causes that are important to families, the cause that is probably the most important to my family has been eczema. We have six children. Four of them suffer from eczema. My oldest son has beautiful skin, no problems at all, an occasional pimple. The next one has outgrown most of his symptoms. Our 11-year-old just has some mild symptoms. My 7-year-old and my 3-year-old have been the real challenges to our family.
Before I get started, I want to know how many of you have ever attempted a home improvement project? It’s not fun, and I compare our journey with eczema to attempting a home repair project. It’s going to cause some arguments in the family, it’s going to cause tension between you and your husband, it’s going to cause some headaches and frustration, and hopefully your end result is going to be better than your beginning result.
I got an article online that talked about steps you need to take before you build. The first step was to identify your dream, and I know we have lots of dreams for our children who are dealing with these kinds of skin conditions. The next was to count your money, and boy have we spent it. The third was to choose your team. I have found in dealing with eczema that we don’t deal with just one doctor. We deal with multiple doctors from different backgrounds. The next step was to learn from others. The final step was to plan for problems, then to think ahead. I’ll be talking about some long-term overall goals that we have for our family as well.
First of all, when I think about my dreams for my children with eczema, number one is this: I want happy, healthy kids. I would like to have a life that’s free of infection. And third, I want a peaceful night’s sleep. We also would like to have meaningful relationships with a team of doctors, and that is a tough thing for me to say because I am grateful to the doctors who have worked with our family. But when I go to the allergist, he says, “This is an allergy issue, don’t talk to your dermatologist.” When I go to the dermatologist, he says, “It’s a dermatology issue, you don’t need an allergist.” The infectious disease doctor says, “I can treat all of this, and I’m more important than anyone.” And the pediatrician quite honestly says, “Ah, this is the worst thing I’ve ever seen, you need a specialist.” If my son has a flare, who do I need to see? Every one of these four doctors says, “You need to come see me,” but I can’t afford to go see every one of them. I don’t have the time or the money for that. So I’ve become like this detective for my child. I would love ideally some day to have a team of doctors that talks to one another or at least communicates online. Our medical records are not online in Wyoming, so it’s difficult even for our doctors to communicate with one an- other. I can’t say that it’s all because they’re not doing something. We just have different resources where we are.
I’d like to have some acceptance from my family, my peers, my children’s peers, other people. My 7-year-old was probably the most extreme of all of our kids. When he was a baby, there was never a single day that we went out in public that someone didn’t look at him and say, “What’s wrong with your baby? Did he get burned, did he fall down? Have you tried this, have you done that?” People fail to notice that they are talking about a child—my child. And there are times when I feel that even my doctors are not recognizing that we’re talking about a living, breathing human being. We’re not talking about a condition. I want my children to be accepted and recognized for who they are as people and not just the skin disease that they have to deal with.
My dream truly is to stop using steroids. We have pumped our kids full of so many! Thankfully the doctor we’re working with now has just taken a “let’s stop everything and start over” approach. I think that that’s working well for us. I want to see some strong, healthy skin.
I want some control. What I want to know is that I have done everything I can do, that I’m not causing this, and that I’ve made every effort to help my child.
Logan, my 7-year-old, is a fantastic kid. He had symptoms pretty much coming out of the womb. Around the time that we moved him over to solid foods, he developed some serious digestive problems; he couldn’t keep any kind of milk down. We tried a total elimination diet completely on our own. It was ridiculous. We got to a point where the only foods he could eat without getting a rash were Coke, carrots, marsh- mallows, and rice milk. We took him in for allergy testing, found out the foods he was allergic to, what we could feed him, got his immune system built back up, and things started looking a little bit better. He is allergic to peanuts, eggs, rice, apple, cantaloupe and peaches, and he is severely allergic to environmental stuff: grasses, molds, trees— all of those kinds of things. He has battled head-to-toe Molluscum contagiosum. In addition to having the red irritated eczema sores everywhere, there were all these little pimply-looking puss-filled things all over him. He had warts all over his hands, feet and arms, and experienced recurrent MRSA infections. And if you’ve ever had MRSA, it is excruciatingly painful. Logan is very, very fearful of doctors. Because he has had so many different bumps and tests and infections, he doesn’t like to be touched or poked or prodded, and a new doctor needs to be really sensitive to that.
Jonah is my baby. Right off the bat the eczema symptoms showed up. He was diagnosed with eczema officially at 8 months, when he had his first MRSA infection. In August 2008, Jonah had a MRSA sore involved in a diaper rash. We had dealt with MRSA before; Jonah had already had it a couple of times, but just small little things that went away. Logan had had it probably three times by that point. But Jonah’s MRSA progressed to the point where he was hospitalized. They did a spinal tap, they did a bone scan, they thought that he had MRSA throughout his body; they thought it was in his bones. He spent four days in critical care. He almost died from this. The doctors were so alarmed by the condition of his eczema, and he had to have two surgeries to remove the MRSA from his body. Over the next 18 months Jonah had 14 Staph infections: he had MRSA 11 times and he had regular Staph 3 times.
In that same 18-month time period we actually had 23 Staph infections. I had it multiple times, and Logan had it multiple times. We could not beat this infection. It just kept coming back. The infectious disease doctor said, “I want to tell you that this is going to be okay, but your child has eczema and Staph needs an open wound to get in.” I missed almost 6 weeks of work that year and I think 41⁄2 were just with Jonah.
When I called in to work and said, “I can’t come this week, I have MRSA,” my boss said, “Well, I think because you’re working with medically involved kids, I don’t want you to be a risk to them, so may- be we need to change positions and move you somewhere else. How does that sound to you?” And I said “Well, like a lawsuit.” And she said, “Don’t go there with me,” and I said, “I’ll go all the way and then some because that’s not legal and you’re making a decision based on ignorance and not fact.” If a child is medically fragile, they’ve been exposed to MRSA more than any of us because they’ve spent lots of time in the hospital and that’s where a lot of MRSA is. So it was a very difficult thing. I didn’t feel sup- ported even in a school for children with special needs.
I get very frustrated when I say that Jonah has eczema and people under- react. My pediatrician recommended that we pull Jonah from daycare, keep him home, and build up the immune system. So, I left my job last October. It was a great choice for us, but when I say I left my job because of eczema, people act like I’m crazy. They say or think, “Oh, my baby had eczema, it was no big deal.” Your skin is the largest organ of your whole entire body and it is a big deal.
The next thing that is advised when you’re going to do a home remodel is to count your money. There are so many expenses that are involved in eczema, and I think that sometimes our doctors forget that. They want to do a follow-up in two weeks or they prescribe a little tube that says “apply to the affected area.” When the affected area is everywhere, you need something a little bit bigger. We have 13 different kinds of lotions in our house right now. Loss of income has been significant for our family. When I left my job, we actually considered the fact that the smartest thing that we could do with two college degrees would be to quit our jobs and to find something that paid less so that we could qualify for state health insurance and cover our kids. We haven’t done that. We’re trying to pay everything out of pocket.
The next step involves choosing your team. Our team is just like the team that every one of you have. I have never used any kind of herbal specialist, holistic doctors, or anything like that. My kids have so many environmental allergies that if someone says, “Have you tried lavender oil, or have you tried this cream, it’s all natural?” I just say, “Well, we’re allergic to nature, thank you very much.” I wish that I had one per- son who would say, “Hey, I’ll be the one in charge and I’ll talk to all the doctors and we’ll be a team to take care of your child.”
I want my physicians to work together, to cooperate with each other and talk to one another. I also need a doctor who’s going to be accessible. If your child’s flared and there’s an infection starting, you can’t call a specialist and wait for six weeks to see them. And I want an approach that’s research- based. A friend of mine came over one day and said, “I was thinking about Jonah and I know how much he’s been through and I got this at the flea market. This lady makes it in her garage and I just know it’s going to help.” I was just like, “Oh, my gosh, we’re paying thousands of dollars for treatments and you think all you need do is go to the flea market?!” Have you ever just gone online in desperation and researched eczema, and seen how many products come up? “The ultimate cure, this is it.” That is a cruel joke to anyone who’s trying to relieve eczema.
Stress reduction for us has been huge. When I first read that stress and eczema were related, I cried because I thought, how can my 8-month-old baby be stressed? He feels my stress honestly. Most of the infections that have happened in our house have happened at very inopportune times. Our flares happen when I don’t have time for them. When I left my job and started staying home with Jonah we spent three months in the house. We didn’t go to church, we didn’t have people over, we didn’t do anything else for three months, and I was able to make sure that he had all of his lotions exactly when he was supposed to. We complied with everything we were sup- posed to do, and I held him, he sat on my lap, we read books, we just spent time together. And his symptoms decreased. That has really been significant.
One of the things that I say is “if we treat symptoms without at- tempting to eliminate the triggers, it’s like just putting drywall on your ceiling when your roof’s still leaking.” When I talk about reactive and proactive medicine, I don’t want to just treat the symptoms that are there. If there is anything that we can do to keep things from itching, flaring, what- ever, I’d like to work on both at the same time. Because for us to only treat an infection is not really going to help.
If you’re going to do a remodel, learn from the experiences of other people. I do have some knowledgeable physicians. I would like them to learn from one another as well and to share things with me. I think doctors and patients can learn from one an- other. I have learned a tremendous amount of things from other parents and from the NEA support groups. I’ve been chatting with different people, and it’s great just to have other people say, “You’re not alone, you’re going to be okay, I’ve gone through this.” I feel validated—and I’m truly relieved and grateful to all of you for letting me know I’m not crazy. We’ve all dealt with the different emotions involved in eczema.
The final thing I just wanted to say to you is that, if you’re going to do any sort of home remodel project, the most important thing that you can do is to plan for the future. And if we’re planning for our children, we’re planning the most important things. We live in a society that is incredibly focused on appearance. If I can heal my child and completely cure his eczema, yet I have never bothered to build his character, it’s really going to profit me nothing. The most important praise that we can give to our children is specific praise of their abilities and not of their appearance. Psychological research shows that the most valuable thing that you can do for a child is to praise who they are and what they do, what they accomplish every day, not the pretty dress they have on. It’s not about the face; it’s about the heart.
Beauty is not about skin. Beauty is not about an appearance. Beauty is the light in your heart, and that’s what we need to show our children.