As A Rare Disease Mom, Quarantine Is Nothing New For Me

As A Rare Disease Mom, Quarantine Is Nothing New For Me

April 24, 2020 Updated June 2, 2020

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Courtesy of Lindsay Neuman

People are scared right now for their future; there’s a fear of the unknown. Their jobs, their children’s education — and most importantly, their loved ones’ health — are all a big question mark. I am constantly multi-tasking, like all parents across the nation, juggling my job and my three- and four-year-olds’ preschool Zoom sessions.

While adjusting to this new abnormal norm, I have found myself remaining eerily calm. Being homebound, feeling isolated, going to five different stores to find one item, and the financial strain: This is not new to me. Our family has been living this life for almost two years, because I am the mom of a child with a rare disease.

My son has Eosinophilic Esophagitis (EoE). His body mistakenly attacks many foods, and items in his environment, as an enemy.

What do the coronavirus and having a child with a rare disease have in common? Well, as it turns out, a lot. I am always on guard when it comes to protecting my child’s health. This entails sending his own set of school and art supplies to his school, free of the top eight allergens. A common cold can set him back for weeks, in addition to flaring up his EoE. Due to his dysphagia, a swallowing disorder, he is only able to tolerate pureed food and liquids.

When we venture out, I have to be prepared for anything and everything. I double and triple check the diaper bag for water wipes — the only type of wipes my son is able to use due to the severity of his allergies. One of my kids’ favorite outings involves activities with crayons and paint — a place that we used to be able to go to without any qualms or hesitations, that now requires me to be very diligent. I bring my son’s Play-Doh so that he is able to create a dinosaur or spaceship with his peers. I carry compounded Benadryl and an EpiPen in the event of an allergic reaction. I have to be careful about his medications, too, because even those can be dangerous. Often times, over-the-counter medications contain soy, corn or wheat; it took months of my working with my son’s pharmacist to figure out the right combination of a specific filler and capsule devoid of preservatives and dyes.

As A Rare Disease Mom, Being Hyper-Vigilant About Health Is Nothing New For Me
Courtesy of Lindsay Neuman

My son’s carefree existence, in which he ate what he desired and was able to play outside without the risk of heat or pollen triggering his disease, was gone in an instant. I often feel like we’re trapped in a daily schedule that doesn’t waver due to the negative impact on my son.

Stress, lack of sleep, or change in our routine has proven to be fairly disastrous on his little body. Last year during a holiday, he stayed up past his bedtime for two nights in a row. A week later, he contracted an infection that landed him in the hospital with the possibility of a looming surgery if his antibiotics were not effective. I handed over a corn allergy guide to the doctors and nurses which detailed that anesthesia, IVs, tap water, even the hand sanitizer that they put on their hands contains corn. We re-scheduled my son’s birthday party and he missed one month of school.

The few family trips that we have taken seem to trigger him as well. A fun weekend trip to my husband’s and my shared alma mater resulted in full-body hives three days later.

The ultimate challenge has been locating safe food for my son. When my son was initially diagnosed with his disease, he was underweight and had very few safe foods. His GI doctor graciously gave me varying hypoallergenic formula samples, but I was terrified when my son reacted to one formula after another. I called my mom, crying, “He’s hungry, but he can’t eat. What am I going to feed him?” Luckily, we finally landed on one flavor of a nutritionally based formula that my son continues to drink as a supplement to his diet today.

As A Rare Disease Mom, Being Hyper-Vigilant About Health Is Nothing New For Me
Courtesy of Lindsay Neuman

It is so hard for me to keep my anxiety in check as my highly allergic son navigates this world. The mere act of accidentally consuming one bite of a food he’s allergic to or simply being in the presence of an environmental trigger is a nightmare. He has delayed reactions to being in the presence of and smelling certain allergens. Even perfume is a problem for him. A cough, gagging sound, the complaint of a headache, or leg pain leaves me frantically recounting a possible new food ingredient or different experience for my son over the past week. I created a ten-page individualized health care plan for his preschool and have detailed lists of safe and unsafe foods, ingredients and brands. I meticulously take notes of his food trials and reactions to share with his allergist. It is like looking for a needle in a haystack, as he has varying reactions to food, his environment, and acid reflux. I have to ensure that others are well informed so that my son is able to maintain a healthy, stable existence.

The physical, emotional, mental and social implications are overwhelming. EoE has tremendously impacted our lives in every way possible, but especially my son’s. I have to continually tell him “no” when he asks for the foods his sisters are eating. He has to deal with the disappointment he feels when he has to sit out of a science experiment at school due to the corn starch being used. The monotony of eating the same ten foods for the last year. My husband and I doing everything in our power to create a special birthday “cake” for him out of decorative boxes and wrapping paper, each tier filled with toys. The anguish of trialing a new food for a certain period, and then undergoing anesthesia and an endoscopy to see how the food has affected his esophagus. Waiting for the biopsies in which he may potentially need to remove a food from his diet forever. It’s impossible to explain the multi-faceted components of EoE to my four-year-old.

As A Rare Disease Mom, Being Hyper-Vigilant About Health Is Nothing New For Me
Courtesy of Lindsay Neuman

My son no longer has a carefree existence in which he can eat what he desires and is able to play outside without the risk of heat or pollen triggering his disease. He struggles daily with his symptoms that are largely invisible to others. He loves learning at school, going to playdates with his friends and playing soccer on the weekend. He rough-houses with his dad, can always make his twin sister laugh when she’s upset and tells silly jokes. You would never know that the simple act of eating or drinking causes him excruciating pain due to this debilitating disease. He dutifully goes to feeding therapy every week with a speech pathologist to decrease the food aversions that have accrued with his EoE. My husband or I sit with him at mealtimes, guiding him to take one bite of food after another.

The sheer lack of control, the uncertainty of his future as he enters kindergarten, the overwhelming weight of being responsible for his well-being in this big world, never leaves me. The truth is that my son’s disease is so complex that medical professionals are often left scratching their heads at his ever-evolving symptoms. We have been to three GI doctors, three allergists, two feeding therapists, and a nutritionist. His allergist is now looking into Mast Cell Activation Syndrome as a coexisting condition.

For a while, I lost myself within my son’s medical complexities. The never-ending questions, all-nighters with him being in pain, constant research, and doctor’s appointments are all-encompassing. However, his diagnosis has taught me to be more present. To appreciate every day with him, to cherish his laugh and take in his sweet interactions with his sister. We have adjusted to, and are making the most of, our new normal — albeit with a few caveats and hardships.

The fear of the unknown has faded into the background. My family embraces each day as it comes, with profound determination and resilience to fight a disease that has no limits. And because of this, we feel better prepared to face the unknown elements of our world’s latest challenge, too.