Our book reading, dinosaur loving, order seeking, joke telling, karate kicking, joy spreading four-year-old. Looking at him today it’s hard to believe how far we have come!
For some, the food allergy journey begins with eczema.
You see, just two short months after Shaun was born he began to show signs of eczema on his face. It was January in Connecticut, and so Shaun’s pediatrician advised us to put a humidifier in his room and to use a bit of baby eczema lotion. Unfortunately, within a week, Shaun’s skin was getting worse instead of better.
And just like that our world got turned inside out! My Mama’s heart knew that this wasn’t just winter eczema.
February & March contained numerous doctor appointments. John and I were in contact with Shaun’s pediatrician daily to check in about the condition of his skin and what skin care plan we were using.
At the end of February, I began to insist that we get referred to an allergist because it is well documented that eczema and allergies are often connected. It felt like overnight I had to become an advocate and liaison between the pediatrician, the pediatric dermatologist and the allergist. I was making sure that Shaun’s care plan included the perspectives of all his doctors.
I wish I could say this is where Shaun’s story began to get better. Instead, Shaun’s skin continued to get worse. At this point, he was covered from head to toe, with angry, red, infected, weeping, bleeding eczema.
As parents, we carried on because we needed answers. Shaun required solutions.
But we were tired, first-time parents. Our hearts were breaking at the inability to help our son. We were angry confused and overwhelmed.
Thank God for our support system throughout this time. Family and friends stepped in to shop, cook, clean and pray so John, and I could stay focused on Shaun’s care.
We tried many natural remedies, creams, ointments and prescription options to calm his skin. We were aware of soaps, detergents, perfumes and environmental irritants that could have been affecting his skin quality. Because I was nursing him, we began to experiment with my diet to exclude foods commonly known to cause eczema in babies. None of these adjustments had any impact.
Enter, Dr. H.
She was the covering allergist for Shaun’s weekly allergy appointment, and since that day she has been the only allergist we see! She took her time. She listened to what my observations were. She asked questions and answered all of mine. She checked in by phone and would often spend 40 minutes in conversation with me to make sure I was comfortable.
It was Dr. H’s tweaks to Shaun’s care plan, in April, that started to turn the tides with his skin quality. Her plan was more aggressive than I had hoped for, but we were desperate. It was time to make some concessions. Shaun was one low-grade fever away from being admitted to the hospital with a blood infection (due to eczema).
Dr. H told me that our previous care plans were like using a bucket brigade to put out a fire in twenty story building. And it was time to match the intensity of the care plan to the severity of Shaun’s eczema.
On April 22nd we began:
- A substantial ten-day antibiotic (for the staph infection on his skin)
- A five-day oral steroid taper (for eczema)
- An antihistamine every 8 hours (for the itch)
Along with a strict topical skin care regimen that we completed with every diaper change!
He also started a prescription formula (and I pumped at his feeding times with the hope of returning to nursing him once his skin was manageable)
We All held our breath as he tapered off the steroid, praying that his skin would stay calm. And it did!
In May we were finally able to talk about testing him for food allergies and starting him on solid foods. And over the next several months we used blood tests and skin tests to see what foods (and environmental) allergies Shaun had. We were told to practice strict avoidance. So before he was a year old, we were carrying epinephrine and avoiding:
- Tree Nuts
- Cod & Tilapia
Getting answers was a giant step forward. Since then we have spent three years learning how to live in a food-centric culture.
- Building routines in our kitchen that help keep Shaun safe
- Learning how to read labels and grocery shop (I have cried more than once in a grocery store)
- Cooking with restrictions
- Strategizing how to attend social events
- Uncovering places allergens hide
- Educating Shaun and his caregivers
- Challenging allergens, with doctor supervision, to open up Shaun’s diet (he is down to 8 allergens)
- Helping other allergy families
And so much more.
Today, with our feet under us, looking back is emotional! It was long, beyond hard and at times incredibly lonely! I am filled with gratitude for John, the doctors, our family, and friends. And I am grateful for Shaun and the joy he radiates into the world in spite of it all!
If you have a story that looks the same as Shaun’s, know that you are not alone!
And if you are living this right now, know that it will take time. It is hard and cumbersome now but piece by piece you will find strategies to recreate your life with food allergies. If this is the case, I hope that you find help and community here.
To looking back,
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