Salve Day

Eczema. One simple little world that was insignificant for me until the summer of 2014. It was then that the word would change our lives forever. This entry is for you, my son. It's the story of our delicate and complicated dance with this awful condition.

Today is Salve Day. It comes around about once every six weeks or so and it is the day I feel like an apothecary making medicinal concoctions in my kitchen. It is the day I prepare Zac's treatments for the month. The road to finding what worked for his specific skin type and the severity of his eczema wasn't easy -- and I have a feeling we will continue adjusting the regimen for years to come. Pictured above are the combination of ointments, creams, oils and medicines that serve as part of our current line of defense against his flare ups.

When the flare ups first made their appearance, I didn't know what they were much less how to treat them. It took several failed attempts using baby lotions and different creams that only exacerbated the problem before we finally broke down and took Zac to see his Pediatrician. "Yep. Looks like eczema. Use hydrocortisone cream for a couple of days and it'll clear it right up." Great! An answer and a treatment option...or so we thought.

The first few days after that first visit were heavenly. His skin was soft, as a baby's skin should be. It was clear, no longer itchy and it looked as if nothing had ever afflicted it. Overjoyed, I discontinued the hydrocortisone and thought we were done worrying about this. And then, it happened. The flare ups reemerged. This time with a vengeance, as if to say, "I'll teach you to try and get rid of me. Here's a double dose of my wrath. Enjoy."

Frustrated, I turned to the hydrocortisone cream again but every time I used it I felt an uneasiness in my heart for not having a better option for my baby. The cream was a quick fix and I knew it wasn't going to last forever, nor was it healthy to use it forever. The uneasiness and mom guilt eventually won out and off I took to the internet to solicit help on Facebook, to research eczema on baby center, to read anything and everything I thought looked like a credible source to help me figure out what to do with my poor, miserably itchy baby.

Our failed attempts to help at home eventually led us to a Dermatologist.

"It's eczema alright. Here's a prescription for a $700 bottle of moisturizer (and a coupon to bring it down to $35), and a prescription for a stronger dose of hydrocortisone cream. It'll clear it right up and then you can use the moisturizer in between rounds of hydro." Great. Thanks...I think?

Fast forward to several months later, a few more visits to the dermatologist (including a pediatric dermatologist), prescriptions for oral steroids, scary strong hydrocortisone creams, hundreds of dollars wasted on trying every moisturizing cream under the sun that anyone would recommend to me and still NOTHING that was helping my baby stay clear for more than 1-1.5 days between treatments. This is just a sample of the creams we tried that did nothing to really help.

Frustrated again, I decided enough was enough. This time I was determined to educate myself on this evil thing called eczema and find a long term, healthy way to help my baby deal with this. The doctors weren't helping me other than to tell me there was no cure and that our only options were corticosteroids. Meanwhile Zac was in daily constant pain, not discomfort, actual pain. His sweet little body only knew relief when he was scratching, and the scratching only angered the skin, making the rashes spread with fury to various parts of his body.

I have to explain that the typical "eczema" the kind that appears on elbows or knees and manifests like small, itchy dry skin patches that can be treated with Aveeno Baby (or other similar creams), and Isaac's condition are two very different things. For him, this eczema isn't something that is transient or emerges with climate or environmental changes. It isn't an itch to simply scratch. His eczema is a daily struggle that cannot go untreated. There is no skipping his skin care regimen for the day or taking a day off from being vigilant. When he scratches it isn't a 2-3 second scratching of an itch that subsides quickly. If left unattended, he will scratch until his skin breaks and bleeds and even then he will keep going until the pain overpowers the itch. Dead skin and blood will crust around his fingernails but the itch will be so intense that he will continue to self-injure because it feels better than the itch. His condition requires that we keep his room humidified to a certain degree at night. It requires 24 hour, round-the-clock treatment to keep the skin moist to manage the itch. He can't get too hot because the rash spreads. He can't get too cold/dry because the itch intensifies. He can't wear polyester or other synthetic fabrics because they irritate his delicate skin. His finger nails and toe nails have to be cut and filed on a regular basis. He has to wear long sleeve shirts and long pants to keep him from scratching himself. If we slack off in any little way, his skin goes from healthy, to ravaged by itch and flare ups in a matter of hours and we have to spend days getting it back to the healthy way it was. This is the awful, evil, time consuming and life changing reality of his condition.

I often wish they had a different name for what he has to deal with because when I try to explain to people what he has, I frequently hear, "oh yeah, I get eczema sometimes too," or "oh yeah my child has eczema too." Um...I'm sure they do but I'm also pretty sure it's not it's the same thing that afflicts my baby on an hourly basis. Sweet people are only trying to help though and my heart thanks them for trying to sympathize with him, and with me. The reality, however, is that few people understand what it takes to care for him and his skin needs.

So, it was at this juncture that we said enough is enough and dug deep, this time determined to be as relentless with our research as Isaac was with his scratching. I used my access to the BYU medical research databases and immersed myself in literature about the skin, rashes, the digestive system and the connection to skin rashes, immunotherapy, and anything that had anything to do with eczema. Jonathan attended an immunotherapy treatment information seminar and I learned A LOT in those medical journals. We worked out a nightly schedule so that we could stay on top of his skin care needs at night. We bought him expensive bamboo clothing because it was moisture wicking, minimized the growth of bacteria and had mitten cuffs to keep him protected from himself at night. All of this to help him find some relief.

I then began looking into essential oils because using oils to replace oils in the skin to help it stay moist and healthy intrigued me, and made rational sense. One day, I shared Zac's journey with this condition in detail with a sweet student teacher/helper of mine after she asked about his condition during one of Isaac's daily visits to my office to nurse.

The next week this sweet, sweet student of mine was handing me the miracle salve. A blend of olive oil, coconut oil, beeswax and 4 doTERRA oils. This was the beginning of a significant change for you, Isaac my boy. I now address you because it is important that you pay close attention to this part of your story. We began using this salve 2-3 times a day, and after about 3 days of faithfully using it we started to see a significant improvement in the frequency and intensity of your flare ups!

Armed with some hope, relief and renewed strength, I continued my research into "gut health" and what I needed to do to heal you from the inside out.

I learned that what I ate mattered (because we were still nursing), and what you wore and how we cleaned what you wore mattered too (thanks to your Tia Liz for that great advice). I was convinced that we could boost your healing if we focused on what you ate and ruled out any food allergies you might have, so off we went to get a skin scratch test done. An option that was not without its skeptics.
 
"We don't typically do allergy tests on babies," spouted the annoyed nurse on the phone.

"But it IS possible?" I countered.

"Yes. Possible. But you will be wasting your time. It's a long test and not inexpensive to do. There's a lot he hasn't been exposed to yet because he isn't a year old yet."

"That's one of the reasons why I would like to have this information now. Cost doesn't concern me. Answers do. If the doctor will do it, I would like it done."

And that was the exchange that took place as I advocated for you, my baby boy. Simple. Straight forward. Not contentious, or at least I tried for it not to be. If you feel prompted to pursue something, pursue it baby. This was a BIG lesson I was about to re-learn.

The day of your skin scratch test I was hopeful that the doctor would give us some direction for helping you heal. After 4 hours and a checkerboard lab experiment drawn on your back, the verdict was in. You were allergic to cow's milk, egg whites, and (the real shocker) SEVERELY allergic to peanuts. When the doctor prefaced his peanut diagnosis with, "now I don't wish to alarm you." I knew it was about to get good -- like 'the story gets crazy from here' good, not 'I'm glad that happened' good.

Severely allergic to peanuts. Great. What does that mean? Well the doctor chose to explain that he typically prescribes EpiPens to patients with 7mm or higher allergy pin wheels because anaphylaxis is likely to occur. And your pinwheel had registered at 10mm. So what turned out to be a quest to treat your eczema, had actually turned into a potentially life saving experiment that we had just done for you.

I'll never forget the wave of gratitude that overcame me on the drive home that day. Following through with a prompting had quite potentially saved you (saved us) from an awful experience, and I could clearly and powerfully feel the Lord's hand in this journey. It was as if the veil thinned for a brief moment and I could see purpose and meaning in everything that led us here. I had spent months cursing this eczema and wishing I could take the burden of dealing with it from you, but that day I realized it had all been for your good. Afflictions are to appreciated for what they can teach us, how they can make us stronger. We won't always see the purpose and meaning behind the challenges we have to overcome, but we can have faith that their presence is necessary for our growth and personal progression in this life. I hope when you are old enough to read this you are able to find meaning in the journey as well.

After we began adjusting what we ate, (because I was in this with you) things started to REALLY take off. We started giving you baby probiotics, I began taking some too (thanks to the advice of a sweet ward member), and you and I faithfully stayed away from dairy, eggs and peanuts. Your dad, uncle Travis and grandpa laid their hands upon your head and gave you a powerful blessing which ultimately brought us to where we are today.

Today, if we faithfully follow your skin care and dietary needs and put our trust in the Lord on a daily basis, your skin is smooth and healthy. Redness and some irritation is unavoidable, but it is a far cry from where we were just a few months ago. The insatiable flareups remain at bay if we are diligent in our efforts. I make your salve in our kitchen and we apply it with ointments and creams at every diaper change to keep you itch-free. You continue to wake up at night, but we are down to only once a night (whoohoo!) for most nights. You are a happy, healthy, energetic little man and I am amazed by you on a daily basis. So onward and upward we go, my boy.

Until the next Salve Day...