He has what???

cropped-img_1245.jpgWhenever I try to tell people about Brian’s condition, I usually can expect to be asked two questions: 1. What is that? and 2. How do you pronounce it?  After a brief explanation, I can then count on hearing, “He’ll grow out of it.”

Let me begin with saying, Brian will NEVER grow out of this.

Hopefully, someday, we will be able to reintroduce some foods back into his diet, but Eosinophilic Esophagitis is a chronic illness.  He will deal with the side effects, tests, medications and “danger” foods for the rest of his life.

Here is a brief explanation of this condition, along with a phonetic spelling.  For more information, please visit one of the these sites:

  • apfed.org
  • curedfoundation.org
  • chop.edu/conditions-diseases/eosinophilic-esophagitis#.VZrTbs5wZD4

Eosinophilic (e-o-sin-o-fil-ik) Esophagitis (e-so-fa-gi-tis), referred to as EoE, happens when white blood cells, known as eosinophils, cause injury and inflammation to the esophagus (tube that connects the mouth to the stomach).  Eosinophils move into an area of the body when it is attacked by an allergy-triggering food or airborne allergen.  They release a variety of toxins to combat the “invader,” but when the body produces too many eosinophils, it can cause chronic inflammation, which leads to tissue damage.  If you have seasonal allergies, eosinophils are in your nose; if you have asthma, they are in your lungs; and if you have EoE, they are in your esophagus.

In order to identify which type of disorder is present, a biopsy of the esophagus is taken and examined.  If the biopsy shows an elevation or strong presence of eosinophils, then the patient is diagnosed with EoE.  It is important to note that the number of eosinophils does not mean one patient is worse than another. Someone with a high number may not suffer with the same symptoms as someone with a borderline number.

EoE is considered a rare disease, although more cases are being diagnosed every year.  It also is a relatively new disease, only becoming really apparent in the last decade.  Below are a few fast facts/trademarks of EoE, courtesy of apfed.org:

  • People with EoE commonly have other allergic diseases such as rhinitis, asthma, and/or eczema.
  • EoE affects people of all ages and ethnic backgrounds.
  • Males are more commonly affected than females.
  • In certain families, there may be an inherited (genetic) tendency.
  • In individuals with EoE, the eosinophils cause injury to the tissue in the esophagus.
  • EoE can be driven by food allergy or intolerance: most patients who eliminate food proteins from their diet (by drinking only an amino-acid based formula) improve. EoE may also be triggered by other environmental factors that researchers are beginning to understand.
  • A gastroenterologist can diagnose EoE based on clinical symptoms, number of eosinophils present, and tissue inflammation.

Patients have continued symptoms, although esophageal eosinophil levels may change over time. Complications, including esophageal strictures and food impactions, may occur. In very rare cases, forceful vomiting, prolonged food impactions (becoming stuck) and esophageal dilations may result in a perforation or tear of the esophagus which needs immediate medical attention. Currently treatment of EoE is directed at controlling symptoms, reducing eosinophil levels in the tissue, and preventing complications of the disease, such as food impactions (http://patients.gi.org/topics/eosinophilic-esophagitis/).

As a family, we wanted Brian to receive the best care possible.  We researched various children’s hospitals and found Children’s Hospital of Philadelphia to be in the top four.  After weeks of putting together medical records, figuring out our insurance and discussing options, Brian and I flew from Phoenix to Philadelphia on a redeye (thankfully he slept the whole time!).  Now, we are waiting for our appointment.

I’m sure Brian will need another endoscopy very soon and the main course of treatment will be removing all food from his diet and placing him on an elemental formula diet for one to six months, so the esophagus can heal.  After that, food most likely will be introduced one at a time and more tests done to ensure his esophagus is okay.  Of course, these are my assumptions based on research, and I will not know for sure until the doctors give us a game plan.

One thing is for sure; without treatment, the esophagus will become more damaged, leading to complications with swallowing and potential tears requiring immediate medical attention.  Already, the damage to his esophagus can be heard through the hoarseness of his voice.

But we are lucky.  Brian looks happy and healthy.  His main source of nutrition and calories comes from his formula.  It is because of his formula that he finally made it on to the growth chart at almost two years of age.  One of his doctors told me once, “We cannot label him failure to thrive, because he was never thriving.”  Now that he is on the chart, we don’t want to risk falling off of it.  I have received wonderful advice and was forewarned that a feeding tube may be in our future.  For the time being, I can pray for the best possible outcomes and load him up on plain pasta, apples, rice and chicken.

Things sometimes look bleak, but I know Brian will be okay.  If we have to remove all food, things will be tough, but we will manage.  If he isn’t able to reintroduce some of his “unsafe” foods, I will be more creative with what he can eat.  If he needs a feeding tube, I will learn everything I can about tube feeding and keeping it free of infection.  When I was pregnant, I prayed for a healthy baby.  Now I am doing what I can to make that a reality.  Brian is a miracle, and I will do whatever it takes to ensure he has as normal a life as possible.

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6 thoughts on “He has what???

  1. Mema loves you and in the words of your papa, No Surrender! Be strong mommy. I know Brian’s little smile will keep you moving forward. I love you both!

    Like

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