Let me take you back to early 2010. When all was right with the world and I was in the throes of newborn baby girl bliss with the birth of my 5th child, Charlotte Rose. Charlotte was my 4th daughter and made her swift appearance into this world on New Years Day 2010.
I had always made an attempt to nurse all of my babies after they were born but it did not come easy. Making milk was a challenge and so I did ALL the things. Fenugreek, teas, oatmeal, tinctures, bulked up my diet with loads of calories and proteins. I was eating lots of eggs, cheese, peanut butter and drinking lots of milk. All the while, unbeknownst to me, Charlotte’s little body was beginning to struggle.
At 5 weeks old, and again at 7 weeks, Charlotte was admitted to the hospital for failure to thrive (gain weight) and infected eczema that covered a majority of her body. After a few days of worry and an abundance of testing and meeting with specialists, Charlotte was diagnosed with life-threatening food allergies. It was a relief knowing what was happening to my baby but also very scary wondering what life going forward would look like.
Charlotte was diagnosed with asthma at 9 months old & after an allergy blood work panel, we learned Charlotte was allergic to: EGGS, DAIRY, PEANUTS, TREE NUTS, FISH & SHELLFISH and also multiple environmental/airborne allergens. With some formula adjustments and a very strict diet that consisted mainly of food avoidance, we started to get the hang of living life as a food allergy family.
After having a GI scope recommended by her allergy doctor, Charlotte was also diagnosed with EoE at around 18 months old. Eosinophilic Esophagitis is a chronic immune system disease that affects the esophagus. EoE is characterized by the accumulation of eosinophils, a type of white blood cell, in the lining of the esophagus.
When eosinophils build up in the esophagus, they can cause inflammation and damage to the esophageal tissue, leading to symptoms such as difficulty swallowing, chest pain, heartburn, and food impaction. EoE is an allergic disease and the most common triggers include foods, airborne allergens & environmental irritants.
Treatment can include dietary changes, medications to reduce inflammation and dilation of strictures (narrowing of the esophagus). Charlotte was prescribed NEXIUM and remained on it for a number of years. She was also prescribed epi-pens, albuterol and multiple allergy/asthma meds during different times in her young life.
When Charlotte was 3 years old she became a big sister to her little brother, Brandon. She was an instant little mommy & such a big helper. They were 2 peas in a pod. We would soon find out that Brandon too had life-threatening food allergies just like big sister.
Fast forward a couple of years and Ms. Charlotte was ready to start kindergarten. What an exciting time it was for her. New friends, a new setting, and learning all kinds of new things. As a parent of a very allergic kiddo, I will admit I was nervous sending my baby girl into this new environment. Her school district had protocols in place that involved Charlotte’s pediatrician, the school nurse and teachers so everyone was on the same page and that Charlotte would be safe. This is called a 504 PLAN. A 504 PLAN is created to accommodate students with disabilities in general education classrooms. Did you know that most people don't realize that having life-threatening food allergies classifies as having a disability?
In Charlotte's case, it was a vicious cycle. Her allergies (airborne) would affect her asthma, her asthma would sometimes linger and make illnesses harder and longer for her to recover from. When she got sick, it was usually a doozy. Her asthma was often hard to control and doctors would require better control before trying things like allergy shots or other therapies. OIT (Oral Immunotherapy) is a type of therapy used to desensitize the person's immune system to a food allergen, so that they can tolerate eating small amounts of the allergen without experiencing an allergic reaction. However, it is important to note that OIT is not a cure for food allergies, and the person will still need to avoid the allergen in their daily life. Charlotte was not a good candidate for this treatment due to her EoE and the high potential for anaphylaxis.
Throughout school & her daily life, Charlotte became accustomed to bringing her own food, snacks & treats most everywhere she went, including school. She never was able to buy lunch from school. Family trips meant planning destinations that included kitchens, and a few stops along the way where Charlotte & her little brother were able to eat safely. Charlotte & her family were able to visit Disney World for Christmas in 2018, the specialness of this trip was that Disney is known for accommodating food allergy families at their resorts & restaurants. However, because of her fears & phobias around food & trying new things, Charlotte had days during this trip she wouldn't eat. As a mom, this was very hard to watch.
Charlotte switched school districts going into 5th grade. Which meant she had one more year until middle school. Starting new schools, being a pre-teen & growing up while trying to maintain the awareness of her food allergies was something Charlotte excelled at.
Fast forward to 7th grade and life as we know it would change in a matter of minutes. Follow our website to discover more about what happened the day our lives changed forever.