The eczema experience for parent vs child

When I reflect on the most challenging bout of eczema in my life, my mind immediately jumps to grades 4 - 7. I had a flare up of eczema on my face, specifically around my mouth, on my inner elbows, and all over the tops and palms of my hands.

It was unbearably itchy; often a distraction during class, and difficult to ignore in my sleep. I felt like my mom and I were on an endless hunt for the magic cure-all cream to solve my eczema woes. I knew I shouldn’t scratch it but I couldn’t resist. This left me with blisters, broken skin, and often pus and blood. There were times when the flare up was so bad that it hurt to close my hands, and burned when food or liquids touched my lips.

Because the flare-ups were on visible areas of my body, eczema impacted how I dressed. I preferred loose, lightweight, cotton t-shirts and sweatshirts. Long sleeve t-shirts especially because they could be pulled down over my hands. I took to layering turtlenecks or shirts with collars under my regular sweaters and tees because I could duck my chin and lower lip into them to obscure the flare-up on my face.

In hindsight, this phase of life with eczema was the most difficult because it stood out and made me feel self conscious, especially at school. Kids often asked what was wrong with my skin, or I would catch them looking at the rash around my lips. I sometimes felt embarrassed by it, and I also felt like there was no end in sight.

When you have a flare-up it’s easy to think that it will be this way forever, because it can feel aggressive and difficult to deal with. I was tired of sleeping with socks on my hands every night, covering thick and oily creams that did nothing to improve the condition of my skin. However, I knew that this was just part of normal life for me, and I didn’t dwell on it too much. My close friends knew I had eczema and provided the best support I could ask for - to just not even notice it anymore, because it was only one small part of me.

It seemed like so many normal kid activities had a negative effect on my skin - swimming in chlorinated pools, playing basketball, getting hot and sweaty in gym class, trying hair products to style my locks. Although these things may have added a layer of difficulty, I didn’t let that stop me from participating.

Eventually, we did find a steroid regimen that worked. But it was a lot of hard work to get there and to find a balance with my skin. The mouth-area flare-up was mostly vanished by the end of 5th grade, and by the start of 7th grade my hands looked nearly back to normal.

I got into the routine of taking my big tub of steroid cream with me whenever I went swimming or had a sports activity. I would apply it afterwards to prevent the flare-up from returning due to irritation from chlorine, dust, or other irritants. Occasionally I was shy to pull out my prescription tub of cream in front of my friends, but I knew that maintaining my skincare routine would serve me better in the long run.

There were a few blips that caused flare-ups to return in high school - like the first time I tried wearing foundation against the advice of my mom - and those old feelings of embarrassment returned, tenfold. Being in a school with a ton of new kids meant that when I had rashy skin all over my fingers, kids felt the need to point it out all over again. By that point I had built up a thicker skin to these types of comments, even if they did sting a little.

What I find fascinating is that when talking about the worst phase of my eczema flare-ups with my mom, she had a completely different perspective. I think a lot of parents of kids with eczema and food allergy can relate to this. For her, as you will read below, the worst phase was when I was a baby, unable to communicate my feelings and needs, and being completely new to this way of life.

The most challenging period of eczema, from my mom’s perspective

"Eczema  - An acute or chronic, non-contagious, itching, inflammatory disease of the skin that can be wet or dry, and is associated with the development of scales and crusts".     I didn't know much about severe allergies and eczema, but I was about to learn.

Amanda weighing 8 pounds 10 ounces, arrived quickly late one fall night in 1990.    Amanda appeared very healthy at birth,  was a little colicky, but not unusual for a newborn.   I had planned to breast feed Amanda for at least 6 months, as I did with her sibling. 

 Amanda  would eagerly latch to breast feed, however would stop after a couple of minutes and  scream out very agitated and then spit up.  It was very difficult  trying to breast feed  but we persevered.    I was assured breast milk  was best for the baby . I tried modifying my diet to see what if any foods  were causing Amanda so much discomfort. No change.    I wondered if I was “not breast feeding right”, so I contacted the La Leche League for breastfeeding advice and support. Very supportive and helpful, but no change. 

Feeding time became more and more difficult.  My husband and I were  very anxious and concerned the baby wasn't getting proper nutrition. None  of us were getting much sleep. Amanda was getting more and more agitated and couldn't seem to keep anything down. Fortunately my mother stayed with us to help  for a few weeks as I was also not feeling well and on antibiotics.   

Amanda  went from spitting up to projectile vomiting after each feeding. By this time, I had been breastfeeding for just over two and half months. I discussed the option of using formula with the doctor again. 

Through trial and error we learned the dairy and soy based formulas were not an option and we were referred to an allergist. The non-dairy, non-soy based specialty formulas available at the time were Pregestimil and Nutramigen. These formulas were very expensive and at that time were only available through the Specialty Food Store in downtown Toronto.  It was recommended that we start with  Nutramigen.  At first things seemed to improve, Amanda fed well, was sleeping better and there was some improvement with the colic episodes.   

Then the eczema started to appear and her hair started to fall out. There were eczema patches on her body but it was the patches on her face that were really distressing.   They were red, angry looking patches over her cheeks and forehead and they looked very sore.  The oat wash and mineral oil or baby oil we were using weren’t helping.  We were referred to a dermatologist. 

While in the dermatologist office waiting room, the mother of a teen-aged girl, asked me what was on my baby's  face.  I said I thought it was eczema.  She cautioned  me not to use cortisone cream on Amanda.  She pointed to her daughter legs, and told me that she had used the cortisone cream on her daughter from a young age and it  had affected the pigment on her legs and arms. 

Once in the dermatologist's office, he advised me to dispose of any baby shampoo, oils, powderss, etc and use only dove soap  at bath time and then he prescribed a cortisone cream.   I thought of the conversation in the waiting room and asked him how the cream would affect the skin  pigment on her face. He said if I used it as directed it should not.   

One of the neighbourhood pharmacists was a  mother of young children and she quickly became a trusted advisor when I was seeking information on use and application of any products for my children.  She recommended that I use a very, very small amount of the cortisone cream and  apply a very thin layer to the affected area. I did as directed. 

During this period many people would ask me what was on Amanda's face, what was wrong with her,  why didn't I take her to a doctor etc. and then  offer their unsolicited advice or home remedies as though I didn't know what I was doing. 

 I would  explain it was eczema and that Amanda  was under the care of a pediatrician, an allergist and a dermatologist. On occasion, some mothers who had to have the last word would respond by telling me their children never had eczema or allergies - like it was a competition? What did that have to do with anything?  I couldn't believe these ignorant people and I would sometimes lie awake at night worrying about how Amanda could be treated if her eczema did not clear up. 

I quickly learned to put some distance between us and the negative people. There were also many very wonderful people  who offered  friendship, support, acceptance and encouragement and didn't obsess about the  eczema.  I did my best to surround my family with those people.

This was long before the internet, and in an effort to get as much information as I could about allergy and eczema, I joined the Allergy Information Association (Canadian) and Food Allergy Network (American).   I was constantly on the lookout at the bookstore or library for allergy related books and material.  Both Associations would offer information letters for purchase.  I think I ordered them all. Some of the first I ordered were a Glossary of terms often used in Allergy  and Allergy avoidance  - A List of additives and/or ingredients  that may contain food Allergens. 

To eliminate potential allergens,  I would become a label reader for any product prior to purchasing, and this list helped me to understand the terms.   I  would pour over the information every night after the kids were asleep trying to learn all I could about allergies and eczema,  and what we could do to make Amanda more comfortable.

 Over the months Amanda progressed to some foods and did not rely solely on formula.  The foods Amanda could have were very limited, (no dairy, eggs, poultry, soy, peas, beans, nuts, etc) and so she continued with the Nutramigen. At about 14 months Amanda was down to one bottle of formula a day.   The eczema patches were  much improved and her hair was growing back. By 16 months Amanda was really enjoying her food and most days her skin was looking great!     

We found a Vitamin A & E ointment in the baby aisle,  that we would  apply if the eczema was starting to return. The  Dove soap and the ointment kept Amanda's skin looking good most days. We used that ointment for many years until  the product was discontinued. That seems to happen a lot in the allergy world.  You  find a product that works for you and, then it is either is discontinued or reformulated.  So frustrating! 

Over the years there were occasions when  the soap and the ointment wasn't enough and Amanda would go back to the dermatologist for the cortisone cream.  It seemed when Amanda was exposed to a food allergen,  the eczema would be more difficult to get under control  and in some cases the cortisone cream was required.   

Amanda was always very happy, busy little girl and didn't seem to notice or complain about the eczema flare ups much. She accepted the routine to get it under control, didn't stress or view it as a daunting task - and that I think was a big contributor to success of managing the eczema episodes.  

Oh hey, I also make videos about my life with food allergies! Check out my rant about living with an allergy that is outside of the “top 8” and the unique challenges that poses.