This letter serves
as an overview of Gavin’s medical condition so you know what life is like for
him, and understand how you can be his advocate.
What is Gavin’s
condition?
Gavin has an Eosinophilic Gastrointestinal Disorder, or EGID. The type
of EGID he has is Eosinophilic Esophagitis, also called EoE.
What is EoE?
EoE is an inflammatory disease where the immune system
mistakes certain foods as parasites and attacks them inside the esophagus by
sending white blood cells called eosinophils. This results in inflammation and the
destruction of healthy tissue.
How does EoE
affect Gavin?
Gavin’s EoE is currently triggered by dairy and soy, so he avoids these
foods. They are not typical food allergies, meaning there is no immediate
reaction if he eats them, so he does not require an Epi pen, and there is not a
concern about an immediate allergic reaction. Avoiding these foods keeps the
inflammation down, prevents long term damage, and minimizes his symptoms.
What are Gavin’s
main symptoms?
EoE is a painful disease. Gavin suffers daily from stomach aches,
reflux, constipation, headaches, leg pain, and fatigue. We are doing all we can
to prevent these symptoms, but pain just seems to be part of the disease. Fortunately, school seems to keep him
distracted enough most of the time. We will be seeing a neurologist soon to see
if Gavin’s headaches are migraines, and we are trying daily medication as a
preventive measure, but have not found one that works well yet. I will be
sending Tums and Tylenol to the nurse in case he is having difficulties.
How is Gavin’s EoE
managed?
Gavin’s care is managed by a pediatric GI (Gastrointestinal) specialist.
The only way to check the status of his disease is by a procedure called an
endoscopy (we call it a ‘scope’), where they put him to sleep and go into his
esophagus to take pictures and samples to biopsy. When the biopsies are viewed
under a microscope, the eosinophils are counted, and this tells us how active
his disease is.
What does the
future hold?
There is currently no cure or FDA approved treatment for EoE, BUT lots
of research is being done to find better treatment options and less invasive
methods to check the status of the disease.
Thank you so much for taking the time to read this. I hope you enjoy your time with Gavin. He has
an incredibly gifted mind, a unique and hilarious sense of humor, a contagious
laugh, a kind soul, and a passion for life. I honestly believe that God knew
the challenges he would face, and gave him these wonderful traits on purpose.
He may fall into the category of a ‘special needs child’ but I simply see him
as special, and I hope he brings as much joy to your life as he does to mine.
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