Evolving

Gabriels pediatrian checking on him at home.

One of scariest things about this world we live in is that it is evolving.  We're not quite sure what will come next, or what it will look like when our children are grown.  These same scary unanswerable questions are what scare me about Gabriel's Eosinophillic Esophagitis.  EE (as its often abbreviated) is a complicated disease, that is new to the world of medicine.  Doctors have only begun discovering and researching 10 years ago.  With only 10 years of medical history, we cant guess what Gabriels adult years will be like, or even his teenage years.  It takes decades of collecting data, examining patients, and experimenting treatments to completely learn all about a disease.


Every visit to the doctor gives me more information on this mysterious monster.  The newest discoveries?  Airborne particles can cause dangerous reactions(no surprise here!), and Eosinophillic Esophagitis can cause long term irreparable damage to the esophagus.  What does this mean for us?  More surgeries.
The only way to monitor the health of Gabriels esophagus is to look at it and biopsy it up close.  Sometimes, an extreme diet, and control medications can make a patient seem nearly symptom free.   Sometimes, symptom free means 'symptoms that we just cant see.'  Biopsies and scopes will closely identify how an esophagus is healing, or not healing.  A healthy esophagus will be checked again in a year.  An unhealthy, or irritated esophagus will prompt us to make changes in diet, medications, or adding a feeding tube, and require a follow up surgery in 3 months to check for improvement.  A biopsy and scope would be required every 3 months until the tests look great.  These procedures are so important because the future of Gabriels health relies on a healthy esophagus today.  We will be scheduling Gabriels next surgery tomorrow.

Eosinophillic Esophagitis is often confused with food allergies.  No new news that food allergies, like peanuts and shellfish, can be airborne! We've known that Gabriel reacts to the smell of these allergens for a while.   Food allergies are an autoimmune response.  Just like when you are sick, and your body produces mucous, or fevers to rid bad germs, your body creates a response to help fight off a food that it believes is bad for it.  Food allergies can be a small as a skin rash, or as severe as a deadly swollen throat, mouth, and drop in blood pressure.  Eosinophillic Esophagitis is a local reaction that happens in the esophagus, or throat.  The esophagus is flooded with white blood cells when a food that the body believes is bad for it invades.  The abundance of white blood cells causes swelling.  Swelling blocks food and will cause either vomiting or choking.  This swelling will also cause irreparable damage.  A domino of symptoms and side effects will follow.

We've come an incredibly long way in Gabriels history.  If his past 4 years is any prediction of his future, its looking great!  As an infant Gabriel vomited daily.  Gabriel didn't spit up, he projectile vomited after every meal.  Gabriels digestive issues caused frequent pneumonia.  Gabriel was diagnosed by chest x ray with pneumonia 13 times before his first birthday.  Most adults have had pneumonia less than 3 times.  Gabriel went from the 99 percentile in weight, to the 20th.  His upset belly caused diarrhea, and food to be passed before the body could digest it.  As I noticed rashes and hives I eliminated foods from his diet along the way.  With every food I eliminated, he seemed a bit more healthy.  Allergy tests are extremely inaccurate in babies and toddlers.  Doctors examined and checked his lungs.  The pneumonia was the most severe of his symptoms, and at the time we believed it was the problem.  His lungs were swollen, his airways were mucousy and narrowed.  Many doctors believe it was Cystic Fibrosis.  He was tested several times for CF, and we eventually found our way to a Gastroentologist.  The Pediatric GI specialist biopsied Gabriels esophagus and colon, and finally, at 2 1/2 years old, we had an answer.  By this time we were avoiding milk, wheat, peach, pear, melon....many more.  Some by reaction, and some by test.  When the doctor added soy and corn to the list of foods to avoid, Gabriel's health finally took a dramatic turn towards healthy!

Research, tests, and surgeries have helped take big steps towards a healthy Gabriel!  An evolving disorder is scary, and mysterious.  We are lucky that Gabriels doctors are educated and have the newest most relevant information.  Im excited to hear how great Gabriels esophagus looks, or maybe that it doesn't, and we have to make changes to prevent more permanent damage.  Either way, research, tests, and procedures are helping Gabriels future look brighter!