Our Healing Journey

by Ellen Cobb

March 2023

As I was searching for the right words to say to possibly attempt to sum up the past several months, words fell short and what continued to come to my mind was “there is freedom in the name of Jesus”. I could write a novel on our journey and one day, I just might. I’m currently pages deep in a single spaced word doc on my computer.

Let me start by saying we wouldn’t be where we are without our incredible family who has driven us, helped cook for us, taken late night and early morning shifts so we could nap, and a million other little things I can’t begin to list. Let me also say how grateful I am for Greg; our fearless leader who’s faith knows no bounds. The most amazingly selfless husband, the most kind, genuine, and gentle father, and the fastest pivoting chef I know who changed courses with us every direction we had to go. Lastly, to the most precious soul who’s become like family to us, my eczema mentor, sister, and friend, Savannah, thank you for believing in me and supporting me. You’ve been exponential in our progress and I’m forever grateful mom stumbled across your Facebook page.

If you take the time to read this, or even if you just scroll through the photos, you’re probably incredibly surprised. Please hear my heart and know it’s not that I was trying to hide things or be unauthentic, it was simply I didn’t have the time or energy to share. Every day, sometimes every hour, brought its own story, game plan, and emotions. We were figuring things out and we didn’t need everyone trying to figure it out with us.

I have dedicated nearly every minute of my every day to healing our son and the amount of time, energy, research, prayers, and tears poured into doing so were not something I had the capacity to share with others outside of our family.

Most importantly, healing Leo holistically was a sacred decision our family made and I wanted to honor the space for us to make wise decisions with the Lord without the clouded judgment and opinions from others.

No judgment for those who have, but I knew for us, steroids, antibiotics, modern medicine was not going to heal Leo. I knew we could and would do it naturally, but I knew with that, it would be an incredibly long process for our family.

Now, where to even begin… this entire process has been exceptionally humbling. Despite our best efforts of raising Leo holistically and naturally from the moment we found out we were pregnant, there is no such thing as perfect health and not everything is within our control. You can go against the grain, decline all the things, which we did, that modern medicine and our healthcare system pushes and even “mandates”, and health issues still happen. It’s just life and we live in a world surrounded by toxins, though we do our best to minimize exposure to them.

I once heard eczema described as “the itch that sometimes rashes” and I don’t know that I’ve ever heard a truer statement. For us, what started as sleepless nights turned into small dry skin patches, turned into open skin weeping, turned into staph overgrowth, turned into head to toe flares. Before I knew it, it had been six weeks since I’d driven us, ten weeks that we’d consumed the same four foods (shredded, unseasoned, low histamine, chicken, white potatoes, bok choy, and pears) on rotation, four months since I’d stepped foot inside a building that wasn’t a family member’s house or Novo, six months since Leo or I had indulged in a single bite of food not made from scratch at home, and eight months since we’d slept completely through the night.

If you don’t know anything about eczema, allow me to give you a brief rundown. There is not a single baby battling eczema that sleeps through the night. They physically can’t. The itch is an itch that is down to the bone. Histamine levels rise significantly at night at the same time that serotonin and GABA minimize, which also all coincides with changes in blood pressure, cortisol, body temperature, etc., in the body. Despite what every doctor will tell you, along with the interwebs, eczema is not a skin problem. Yes, there are toxins that will trigger mast cells to release histamines, which can cause rashes, hives, and eczema, but you have to get to the root cause, the gut.

We were already living a clean and lower toxin life pregnant and then raising Leo, but we had to take things a few steps further. More Air Doctor purifiers, even less EMFs, all clothing 100% organic cotton, all water sources filtered, and the list continues. So much of eczema can be impacted by environmental toxins, EMFs, mineral deficiency, toxic fibers, and the list continues. The whole “it’s about balance. 80/20” mindset doesn’t really work when you’ve got an eczema baby. We had to, and continue to be, extremely intentional in every area of our lives. Anything we could possibly improve or control for his health, we had to implement. The body can also easily get overwhelmed with histamine due to internal and emotional stressors, which then triggers hives and causes flares, so there’s so many factors we had to look into when healing Leo.

Every day was laced with grace, immense joy, new hurdles to overcome, and prayers for total and complete healing. The days turned to weeks and weeks to months. Despite the many sleepless nights, most of which we were so gutted wishing we could take away the itch and misery of it all for him, the days were mostly still full of smiles, playing, and exceeding milestones, which is such a blessing. So many eczema babies aren’t able to do this due to having to be wrapped head to toe or apparently a tremendous amount of lethargy it can cause… we never had this problem, haha. If anything, the exact opposite! He stayed full of energy!

 

One of the things about Leo that is such a gift is his temperament. He is such a happy, little bud and truly never cried with actual tears until he turned 9 months old. I remember it distinctly feeling like something was very wrong for him to actually be upset. I can best describe it like someone flipping a switch. At night, he became a different baby and we stayed awake holding him, praying over him, pacing the floors with him, changing his bandages, holding his little hands to keep him from scratching, doing everything we could, but it wasn’t enough. However, before we knew it, daytime naps started being impacted too.

He was scratching to the point of bleeding any time he tried to rest and what worked one day seemed to cause a flare the next, so we were pivoting faster than I could keep up with. It felt like we were living in an isolated universe and everything outside of Leo came to a complete halt. We could make no plans because we didn’t know what the next minute would hold. We physically couldn’t even leave the house unless it was between flares, someone else was driving us, and he was in sleeves on his hands and feet with me in the backseat beside him. My milk supply dropped substantially due to the extreme stress, weight loss, and lack of sleep. We weren’t able to supplement with my frozen stash as we suspected it had things in it he was allergic to, which was later confirmed and the supplements I got to help with my supply were causing him to flare, so I had to stop taking them. Thankfully, I was able to cut back my class load to remove my hot classes, miss less feedings, and nurse him and pump around the clock, which helped significantly. The Lord sustained me every step of the way and truly multiplied my supply. My husband and I were both missing back to back days of work and we were now in a situation where the itch was no longer isolated to night, but throughout the day. Any extreme emotion, even excitement, food, environmental, truly anything, could trigger an attack and it was all hands on deck. We were holding him for about 5 hours a day total for his two naps and then up pacing the halls all night. I had to have someone with me at all times because I was pumping every two hours to help keep my supply up, but someone had to be ready to jump in if he had an itch attack or readily available to hold him for naps, which I couldn’t do if I was pumping. I would be lying if I didn’t admit that many nights I cried so hard, I could hear my tears hit the pillowcase and fall onto the sheets. I was so broken feeling like I was doing everything in my power and nothing was helping. In fact, it was getting worse. Through it all, Leo continued to smile, play, thrive, and most of the day, you would never know something was wrong because he was just so joyful. It was absolutely crazy how one minute he’d be laughing and smiling and the next, would be itching so badly, sobbing in agony, and in a full flare. Though beyond exhausted, I knew it was time to fight harder. Every single day I advocated for him trying to find answers and making decisions literally with my husband and Jesus.

Through a series of panels, we finally had answers. Leo was allergic to garlic, tree nuts, a very small allergy to peanuts, and his egg allergy was labeled as anaphylactic and we were given two EpiPens. Thankfully, we’d suspected this about eggs and removed them from my diet when he was six weeks old. Of course this entire testing situation has its own story as eggs didn’t even show up, but we knew, pushed, and when egg powder was placed, it was instantaneous, but we were leaving with answers, big answers. Food allergies and food sensitivities impact leaky gut and the intestinal wall lining that replaces the inflammatory properties when there’s a lack of good bacteria. All of his baby food had been made with garlic olive oil, most everything Greg cooked was also in garlic for me, and since I’d eliminated dairy at three weeks post-partum, I’d been eating cashew yogurt, along with multiple trail mixes with nuts and also apples and almond butter every day. They recommended further blood testing, which we later had that confirmed (thankfully) all of his nut allergies are very low. They also recommended we start him on the Dupixent shot, which we declined. In addition, they told us his staph overgrowth was spreading and we left the doctor with multiple RX: two topical steroids, one oral steroid, one oral antibiotic, one oral antifungal, etc. On the drive home I remember vividly this huge sense of relief. Both Greg and I were so teary out of pure gratitude to simply have answers. With this new sense of hope and answers, came this firm belief and reassurance that I needed: we would not have any of the RX filled and we would continue to heal him naturally and holistically. I think it’s hard because we grow up thinking that all acute care issues are resolved by the doctor, but reality is, western medicine really lacks knowledge and experience when it comes to treating root issues, treating the whole person, etc. I knew that steroids would spiral us down a path I didn’t want to take and I knew the last thing his gut needed was any oral medicine to further impact it and in turn, the eczema.

After removing the new discoveries from his diet and mine, there was improvement, but the hard thing with our eczema journey was the waves of emotion that came with the roller coaster of how quickly and much things varied. His skin could go from almost completely clear to full flare in a matter of minutes. The itching could go from non-existent to itching to the point of scratching and bleeding within seconds. Though we’d made some improvements, we were still struggling. After two food sensitivity tests, hiring a naturopath, seeing our holistic doctor in Atlanta, and enrolling in a six month program with a holistic pediatric nutritionist that specializes in eczema and allergies, and introducing homeopathy, we now had new insight into some additional foods that could be triggers. Once again, we found ourselves pivoting: new food prep, throw out the old, new food plan, more eliminations (I’d already removed the top eight allergen groups). Just as before, we saw improvements, and even some pretty significant ones. However, the itching lingered, even when his skin would look almost completely clear.

I was still spending hours every day researching, learning, trying to find solutions, deep diving into modules for my six month training program with my holistic pediatric nutritionist, and fighting for Leo every minute of every day. It seemed like with each new day, I found another rabbit hole that led me into more knowledge and insight, so I was constantly taking notes, researching where to purchase the next thing, and updating our excel docs and whiteboard. Though so much, what we were doing still wasn’t enough, so we decided to make another change and went on a low histamine, low salicylate diet, which wouldn’t have been possible without my “eczema mentor”, who’s now become like family, Savannah. She’s a literal angel and such a huge part of our healing story. Praise God for Facebook groups and connections! We truly wouldn’t be where we are today without her.

I was determined to heal Leo and with every fiber in my being, I would do whatever it took. I’d always known as a mom, you’d do anything in the world for your baby and I was affirmed every day this was my purpose, my why. I didn’t want to leave his side and nothing else in the world mattered. Most days, our world stopped and it was just us and Leo. As hungry, exhausted, and depleted as I felt, the Lord consistently gave us the most unexpected moments of joy throughout each day. It taught me to really slow down, be present, soak it all in, and be thankful for the good. The little things I once took for granted, like being able to easily grab a snack or drive my son in the backseat without him having to ride in scratch sleeves itching and bleeding, made me so thankful for every wonderful moment we enjoyed together throughout our days.

Simultaneously in starting this new diet, we received our first round of results shedding light into Leo’s gut health and the dysbiosis he had impacting everything. Having the specific insight on his digestive tract allowed us to better support his gut in the areas he needed. Who knew there’s even specific bacteria in your gut associated with sleep? We later received even more results from a specific gut health test that gave us an incredibly detailed overview on overgrowth, undergrowth, short chain fatty acids, and everything between. It was a comprehensive list to help further catapult us in the right direction!

I could’ve never imagined how physically, mentally, and emotionally challenging all of this would be, but we went all in, 1,000%. No seasonings, no leftovers, no sauces, etc. Everything we ate and continue to eat has to be made at home so we know there’s zero cross contamination and also so we can monitor fully what we’re eating with every single bite.

There was no magic day, no major moment, but one day, the good skin days just started to string together longer than they had, the itching became less, the nights became easier, and our pallete started to expand. Before I knew it, we were a few months into overall progress and true healing. It was working. We were progressing. The hope I’d prayed for was actually starting to peek through and I felt like I could finally breathe. Things continued to improve and we reached major milestones, like: unwrapping our legs consistently for the first time in six months, me driving Leo with him alone in the backseat and without scratch sleeves, independent, long daytime naps, a stretch of time in the crib at night, co-sleeping all night without him waking up, zero daytime itching, many nights without any itching, road tripping without itching in the car seat, riding in the car seat without scratch sleeves, adding new foods into our diet, adding old foods back in, etc. This journey isn’t linear. There will still be some flares as we continue re-introductions and as more teeth come (teething is a major eczema trigger as it weakens the immune system and also causes excess drool), but the flares are much shorter, far less itchy, and we’re able to control them quicker.

I’ve learned more about gut health, liver detox pathways, and histamines than I ever could’ve imagined. I’ve been challenged physically, mentally, and emotionally in ways I can’t begin to describe, but here we are. No, we’re not 100% healed, but we’ve come so far in our healing journey. We’re on the other side, which is somewhere I honestly questioned many days if we’d get to. No antihistamines, steroids, or modern medicine, just a lot of hard work on healing the root cause and focusing on the gut and liver.

Leo means brave, lion-hearted and I can’t think of a more perfect name for my little warrior. He makes me brave every day and I’ve never been more proud of any title in the world than being called his mom. I prayed throughout that the Lord would use our story to help others and my hope in sharing this is that it does just that. Whatever battles you’re facing, whatever trenches you’re in, you are not alone and it is not forever, though it often feels that way. I pray our story will bring honor and glory to Him as we shout of His goodness and grace and how He carried us through this season.

I don’t have the answers for what lies ahead, but I know He holds our future and I’m excited for the opportunity to grow and learn even more as I embark on a new journey to be a Holistic Health Coach through the Institute of Integrative Nutrition. As I continue healing Leo, I’m grateful for a platform to learn even more and continue to expand this passion of mine.

Little Leo, I love you. We made it to the other side buddy!

Updates

July 2023

They said it couldn’t be done, but here we are, doing it! No, we are not “lucky” and we certainly didn’t just “grow out of it.” Every day has been a relentless battle for healing, and we’re not stopping! I’ve devoted every minute, thought, action, and my entire being toward healing my son.

We’ve undergone numerous tests – ERMI, 2 IgG tests, 2 IgE prick tests, gut tests, IgE blood draws, GI maps, Mycotoxin tests – coupled with gut and liver support, homeopathy, food eliminations, and every conceivable natural remedy to aid his body. Countless hours, boundless energy, unwavering heart, and unyielding commitment have brought us to where we stand today.

Despite being entirely unqualified, I’ve learned that the Lord has qualified me to be Leo’s most capable healer with His guiding hand. I doubted it often, but I had to believe that healing was our only option. I have no letters behind my name and no formal degree that has taught me what has gotten us here, but I am honored He saw me fit enough to entrust me with this.

Though this journey is unpredictable, and minor flares may surface as we continue to navigate more foods and encounter new things, we are here, and here is so beautiful. We’ve had the most consecutive days to date without a single itch or flare! I can’t believe we are living in a reality that was once my heart’s biggest prayer and my loudest cry.

To the sleep-deprived mom spending countless hours researching, tired of the monotony of the same diet, and weary from changing bloody sheets – don’t lose hope. The story isn’t over yet. Believe that someday, their little arms and legs will be free, and so will you.

To my sunshine boy, you amaze me daily. I will always put your first.

I love you endlessly.

February 2024

I keep joking that the Lord is giving me a little bit of everything so that I can firsthand relate to my clients as I officially launch my business, Holistically Healthy.

A few months ago, we unintentionally discovered through final follow up labs, that Leo had Bartonella, the “cousin” of Lyme. After additional blood work, we learned he also had some IgG positives for Borrelia Burgdorferi, the main bacteria that causes Lyme. He was asymptomatic to both, so we were really grateful to have the insight from our functional doctor as we would have never known! Thankfully, we were able to deal with these gnarly findings with just 2 herbal remedies!

It had always been a strong desire of mine to do a deep dive into my health as a whole. I know our holistic healing journey with Leo likely stemmed from me in some form or fashion and was either passed down through the birth canal or to him in utero as both lyme & mold, along with gut dysbiosis (which we started tackling at 8 months old), are major root causes of eczema & allergies.

After extensive labs, I discovered some really big wins, like a rockstar immune system & nearly picture perfect GI Map (shoutout to all of the gut healing we’ve done!), but I also learned some areas we needed to quickly address, like chronic, stage three Lyme & some mold toxicity. I was a bit surprised to discover these things as we’d previously tested Leo & our home for mold and I also was/am experiencing very minor symptoms, thankfully.

After recently coming out of a season of a perpetual state of research, fighting for answers, constantly advocating for my son, etc., it took a minute to process before accepting, “here we go again!’, but, here we are!

I am truly so thankful to have this big piece to our puzzle and am trusting & believing this new chapter of healing is the “book end” to our healing journey.

I have spent countless hours researching, digging deeper, and praying for direction! I’m so blessed to have a doctor who believes that antibiotics & modern medicine and who is walking alongside me as I holistically heal.

Here’s to healing and fully acknowledging it’s nothing short of God’s goodness and grace how strong my body is through all of this and how well I am feeling despite it all! “All that I have is a hallelujah!”