The Story of Itchy Joe & The Eczema Monster

I thought our story might be worth revisiting for any parents that are struggling with childhood eczema (atopic dermatitis) and the challenges it presents.  These insights about living with and managing this skin condition came about as a result of our experiences with our son, Joe. I hope by sharing our story, it will let other parents, faced with similar challenges, know that there is support available and hope for healing.  We sure have learned a lot about eczema since Joe came along in 2002; particularly that it can be a life-altering condition for both the child and the parents, and it is important to be be well-informed and have a good support system. This is NOT intended to promote any specific product or therapy, and its sole purpose is to provide support and inspiration. My advice should not be used to diagnose any skin condition or to substitute for the advice of a professional health care provider. However, get informed, be proactive, and realize you have treatment options within and beyond the scope of mainstream medicine.

And So it Began

Joe was born at our home in Connecticut on December 11, 2002, after a short labor. He was our second child (we now have three), and my husband, daughter, and I were thrilled to be welcoming a new baby boy into our family. Both of my pregnancies were fairly uneventful, and we had never had any health concerns with our first child, so nothing really prepared us for what was to come.

Joe developed eczema on his face at about two and a half months old, and it quickly spread to his whole body. For a few months, he looked like a little burn victim, with sores covering large portions of his head, face, and arms. At around nine months of age, it subsided enough to give us some sense of normalcy, although he still had flare-ups and would scratch himself raw if we didn’t watch him constantly.

Off to a Rough Start

Initially, we took him to the doctor, who prescribed a new cream, Elidel.  Being uneducated about the immune system and eczema, and concerned about our child’s comfort, we tried a sample of the cream for a awhile. I guess I naively thought it would clear up and that would be that. Sadly, about a week later, Joe got very ill, with an extremely high fever. To make a long story short, he was hospitalized and diagnosed with Kawasaki Disease, which damaged his heart, causing enlargement of the coronary artery and small aneurysms. Though I was assured numerous times that the Elidel cream could not have caused the illness, I nonetheless, felt compelled to pursue a more natural treatment of my son’s eczema, as there is no known cause for Kawasaki Disease, which in my mind, discounts nothing.

Further, I now realized that Joe’s eczema would be a chronic condition that we have to manage, and not just a little rash that would go away in a few days. Therefore, immunosuppressive creams and steroids were not my method of choice to manage it.  Of course, I am not discounting the usefulness of these drugs for many families managing this disease, but that’s not the route we chose.  And, if you would like to avoid medications with unknown side-effects, you do have other options.

Disillusionment and the Onset of Clarity

This became even more clear to me after we waited several months to get an appointment with a highly recommended dermatologist at the prestigious Yale Medical Center. After a five minute appointment, and quick look at Joe, the doctor prescribed us a one pound tub of steroid cream and told me to slather him with it daily. I left that appointment feeling deflated.  Yet, as I made my way downstairs to the pharmacy, with prescription in hand, I had a sudden resolve, sparked by mother’s Intuition. I decided that day to NOT fill the prescription, and do whatever it took to treat Joe’s condition in the most natural way I could. But, having just been to one of the most knowledgeable skin doctors in the country, I realized I wouldn’t have a lot of support from the mainstream care professionals from whom I had been seeking advice… and hope.  Nonetheless, I felt more optimistic than I had in awhile, at least armed with the certain diagnosis of eczema.  I also felt deeply grateful that I had the ability to be a stay-at-home parent, otherwise Joe’s condition would be much harder to manage.

Rub-down Routines

We just had to take one day at a time. At first, we helped manage Joe’s discomfort by using a natural eczema cream from Earthworm Herbals, which was a home-based herbal company in Massachusetts. We used this several times a day to moisturize all over, as well as on spots, when he had a flare up. When his skin was really oozy and looking borderline infected, we would clean the weepy spots with half peroxide, half water, then give him a lukewarm bath and then immediately rub him down with the cream.

When out and about, I carried a less oily topical cream to use to make him comfortable, if needed. I used several natural, plant-based creams from the health store and some homemade concoctions.  Thankfully, we’ve avoided the use of any oral antibiotics, though they were prescribed many times. I guess I just used my own intuition and judgement and felt we would get him through it, making him as comfortable as possible in the meantime, without starting an endless cycle of antibiotics.  I did keep a tube of an antibiotic lotion that had been prescribed to us, just in case I ever felt anything was looking too red or infected. But, thankfully, I only used it once or twice on spots where he had accidentally scratched himself deeply when we weren’t looking, while travelling.  I think antibiotics definitely have their place, but for us, they were considered a last resort with regards to Joe’s eczema.

An Education in Eczema and Natural Health

Though in reality, it was only less than a year that we dealt with this condition at its worst, I feel like I’ve read every article, tried every cream, talked to every doctor and tried every supplement to help relieve Joe’s symptoms. Shortly after its onset, I began an elimination diet myself, as I breastfed Joe. At the time, I was a less than health-conscious vegetarian, so I eliminated all the potential allergens, such as wheat, dairy, egg, soy and nuts. This basically left me on a limited whole foods diet. Though I lost some weight, and felt better myself, by the end of three months, it was challenging to eat such a restrictive diet, and also did not seem to make much of an impact on Joe’s skin.

In fact, it wasn’t until we went to visit family in Newfoundland in July of 2003, that Joe’s skin started to improve a bit. And, by this point, I had gone off the elimination diet, with the exception of still avoiding nuts and the things Joe tested very positive to on the allergy skin test. Looking back, however, the complete lack of pollution and very clean ocean air probably gave Joe’s immune system a jump start, and, in the long run, made us more aware of the importance of a holistic lifestyle to support good health.

Elimination Diet Wisdom

Accordingly, the three month elimination diet was really a fascinating experience, though, because never in my life had I had the motivation to eat so naturally. The possibility of helping Joe was a real motivator, and the side-effect of seeing how it feels to eat absolutely no processed foods, no junk foods, no sugar, etc. was interesting.  I wish I could say I maintained that level of healthful eating indefinitely, but, I must admit, I succumbed to the social pressures and trappings of the American diet for several years after. But, I believe it probably foreshadowed my interest in nutrition, eventual loss of over 100 pounds and transition to a whole foods, vegan diet.

Despite not seeing huge differences in Joe’s skin as a result of my elimination diet while breastfeeding, I do not discount the importance of an overall healthy diet in the treatment of eczema, as a primary support for the immune system, whether it be second-hand via breastfeeding, or the child’s own diet. As we introduced solids to Joe, we were careful to note his reactions, and keep things as simple as possible.

Scratching: The Biggest Challenge

Because scratching is a major concern with eczema, much of our time was spent distracting Joe, keeping his hands busy, so he wouldn’t hurt himself. I trimmed and filed his fingernails every other day, and we put socks on his hands while he was sleeping. We made some soft wristbands out of fleece to snap around his hands while in the car seat. Restraining him like this seemed so cruel at first, but we soon learned that he was much happier in the car if he couldn’t start a scratching frenzy. He could move his hands enough to hold a toy and scratch his legs (which we cover with pants), but not to get digging at his head and face.

At the beginning, I didn’t know how I’d ever go anywhere alone in the car with the kids, because every time I would go out, he would be bleeding by the time I got where I was going. But, we devised ways to make it to and from our destinations with minimal injury, and life found a new patterns and routines to manage our itchy passenger.

At home, Joe slept with one of us all the time, so we could be aware if he was starting a scratch fest in the middle of the night. Thankfully, despite his itchiness, he was always a good sleeper. But, this constant diligence definitely came at the expense of my own and my husband’s sleep quality, and in that first year, we both racked up quite the sleep debt, and probably knocked, at least, a few months off our life expectancy. But, our diligence paid off, and it strengthened our marriage, acting as the Anti-Itch Team!

The Emotional Roller-coaster

From an emotional standpoint, in some ways, it almost felt like we were dealing with a child with a disability. Thankfully, for parents of children with eczema, there is always the hope that the condition will subside with age, even in the most severe cases. However, it definitely brings with it some emotional challenges when we are going through it.

First and foremost, when you have an infant with severe eczema, your whole focus becomes keeping the baby comfortable and keeping them from scratching themselves raw. And on some level, it’s hard not to feel deprived of that special time with your cute little baby. I know, at first, I felt cheated because my whole focus was just on keeping him from getting infected. I couldn’t hold him the same way I did with my daughter, because if I held his face against me, he’d just rub on my clothing until he was bleeding. Though nothing would light up my day like his smile, some days, I was just so emotionally and physically drained, that it was hard to feel very hopeful about anything.

To compound the fatigue and hopelessness, I often felt guilty that I was not giving my older child enough attention and that her experience of being a big sister was all about Mommy being stressed and exhausted, and making sure not to touch Little Joe’s “boo-boos.” But, we got through it, and I can now look back on the experience and all it taught us.

There is Hope

Eczema is, unfortunately, is a condition with which many new parents will be faced.  Though much of the research regarding the success of treatments is focused on the mainstream medical approach, the challenges of treatment are similar, no matter the modalities you choose, including sticking to care routines while trying to maintain balance in the rest of our lives.  The impact on quality of life is real, with sleep disturbances and itching being primary contributing factors.¹ But, keeping in mind that this is a phase of life, and the odds are in your favor that your child will improve over time, will help you maintain a more positive outlook.  

As Joe grew, we continued with our daily moisturizing routine, but overall things got much easier. He still had very dry skin, and his wrists, back of his knees and cheeks still flared up a bit on and off, but nothing to the degree of his first year, which made managing it a whole lot easier. He was still a little itch monster, though. I don’t know if was just out of habit, or from the dry skin, but we still kept him in 100% cotton clothing, and he didn’t get to run around “nudey” too much, or you would find him in the corner scratching himself. As his diet expanded, we tried to avoid processed foods and the things he was allergic to and noticed that his skin was much nicer. We, also, continued to use natural, simple ingredient eczema creams on any flare-ups, and once a day just to moisturize.

As Luck Would Have It

I feel that Joe is one of the “lucky” ones that the doctors said often “outgrew” eczema in the first few years of life.  But, I don’t think this luck was a completely random phenomenon. I think it was fueled by our willingness to trust in our intuition, weather the storm on our own, and, maintain faith that if we provided the right conditions, Joe’s little body would fight to heal itself.  Joe still has some serious allergies, and this alone has been challenging. But, he developed into an active, happy kid with little to no memory of his infantile health challenges, and the constant distraction of itching.

I remember when Joe was five or six months old, we took our daughter to the doctor for a check-up, and the doctor noticed how bad Joe looked with all the eczema on his face and his head wrapped in gauze and he said, “Don’t worry. It will get better.” I remember thinking, in my sleep-deprived state, “How can he say that?  He doesn’t know, and I’ve never seen a child with eczema as bad as Joe!”  But looking back, the doctor was speaking from wisdom, and was right. Not only did Joe get better, but our ability to deal with his condition improved, as well.  I don’t think we really realized how childhood eczema changed our lives until we had the hindsight to look back on the experience and acknowledge the challenges we had overcome.

Where We Are Now

Overall, eczema definitely presented a new challenge to our lives. We had to find the tools that worked best for us in managing it, making our son as comfortable as possible, and maintaining a sense of gratitude for all the resources and support we did have. Before I had Joe, I used to think eczema was some little patchy rash people got on their elbows or something. I had no idea of its potential severity. I feel a special bond with the other parents I have met who have children that suffered with severe eczema, as it is something you just can not imagine unless you have experienced it.

As I update this today, in January 2018, fifteen years have gone by and Joe is settled in nicely to his teens!  He’s a happy, thriving kid, with tons of energy and no real memory of his struggles with eczema or Kawasaki Disease.  Aside from managing his food allergies, and a mouthful of dental cavities around age ten, overall, he has been a healthy guy.  He is an avid hockey player and has not had to deal with any skin issues, with the exception the occasional patch of hives from a contact or food sensitivity.  When I reflect on the mindset of my 15 year-ago self, I remember how all-encompassing Joe’s condition felt, and I’m grateful it’s a story of growth I can now tell with a positive outcome.   

My Tips for Managing Childhood Eczema

I see managing childhood eczema, from a holistic perspective, to include three primary objectives; minimizing discomfort, focusing on healing, and continued  lifestyle habits that support a healthy immune system and balance. Whichever treatment options you choose, try to get into a good routine, asking for help when you need it.  This will allow you to take care of yourself, so you can maintain good emotional and physical health as a primary caregiver. You are part of your child’s treatment process, and the energy you bring forth is important!

Some basic lifestyle shifts eczema prompted for us included maintaining a fairly chemical-free household, following a whole foods, vegan diet (though, Joe is a teen now, so vegan doesn’t always equal healthy choices on his part), and we emphasize the importance of sunlight, time in nature, positive relationships and good sleep to foster a sense of balance.  Basically, we just do all we can to support a healthy immune system and general good health and well-being.  I certainly hope, that if any new parents with children with eczema are reading this, that it gives you hope that it does not have to be a life-long condition, and there are plenty of things you can do to empower yourselves to care for your child, in addition to the recommendations you may get from medical professionals.

 

References

1. Santer M., Burgess H., Yardley L., Ersser S.J., Lewis‐Jones S., Muller I., Hugh C. & Little P. (2013) Managing childhood eczema: qualitative study exploring carers’ experiences of barriers and facilitators to treatment adherence. Journal of Advanced Nursing 69(11), 2493–2501. 10.1111/jan.12133