Ee-oh-sin-oh...WHAT?!

Eosinophils (E-o-'si-n-o-"fils) are a specific type of white blood cell generally associated with allergies, parasites and cancer. Eosinophil Associated Disorders are a group of rare chronic illnesses. While they are still considered rare, these disorders are rapidly emerging as a healthcare problem worldwide. Yet, many patients suffering from these disorders go undiagnosed for years due to a lack of information or awareness of these diseases.

In eosinophilic disorders, a high numbers of eosinophils accumulate in body tissues causing inflammation and damage.  These disorders are classified by body tissue where eosinophils accumulate. For example, in one of Annabelle's cases, Eosinophilic Esophagitis, the eosinophils attack the esophagus. The only way currently that these disorders can be diagnosed and monitored is by tissue biopsies. What this means is that in order to be diagnosed, Annabelle has to routinely go into the operating room and have upper endoscopies and colonoscopies during which multiple biopsies are taken of the tissue throughout her digestive system. Her first Endoscopy was performed March 2013, a large numbers of eosinophils were found in the esophagus tissue samples when the biopsies were sent to the lab. The only way to monitor the progress of the disease or the effectiveness of treatments is to repeatedly go back into the O.R. and have more biopsies taken. We repeated her next 'scope' 8 weeks later that included a colonoscopy in addition to the upper endoscopy. This time the biopsy's showed counts of Eosinophils in the intestines and colon which gave Annabelle her second diagnosis of Eosinophilic Gastroenteritis. We will likely continue to perform Upper and Lower Endoscopies on a 6-8wk schedule until remission is established and we have control of the disease. This will go on for the rest of her life even during remission stages, repeating scopes every several months to no fewer than 1x a year.

Eosinophilic Gastrointestinal Disorders render the patient unable to tolerate food proteins. Eating food causes damage to the GI tract, pain, and symptoms similar to those you would experience from a stomach virus. Sometimes the pain is bad enough each and every time they swallow that they just stop eating all together. Yes, really. It gets that bad. Depending on the number of foods that trigger the eosinophilic reaction, some who live with EGID need to stop eating ALL foods just to control the damage and inflammation. In these cases, just like Annabelle, the patient is given a special amino acid formula as their entire diet. In most cases this feeding is delivered through a feeding tube. We fought for a long time to avoid tube feeding, but ultimately lost the battle after 6 months from diagnosis. Annabelle began with an NG Tube in her nose that we had to place weekly at home, 5 months later she underwent major surgery and received a Nissen and permanent feeding tube, called a G-Tube that was surgically placed into her stomach. That is how Annabelle feeds, burps and takes her medications now. 

Eosinophilic Esophagitis can also be triggered by environmental allergens, causing flares that can only be controlled with the extended use of steroids. Unfortunately Annabelle's EoE does react to enviornmental allergens. She wears a face mask and takes a combination of many steroids daily to avoid a relapse caused by enviormental allergens. 

All of these are chronic diseases requiring long term treatment, with no known cure.  They are also not something that people who suffer from them will "outgrow". Sometimes the symptoms can be well controlled with dietary changes, sometimes they require steroids, but the disorders are now believed to be relapsing and remitting, which means that you can have some success with treatment but could then have flares or relapses. During relapses and flares, these are debilitating diseases leading to missed work, school, social outings, etc.

Also, delays in diagnosis are common. Symptoms vary from person to person and can mimic other, less serious diseases. Even now with prevalence of the diseases on the rise, many doctors and nurses have not even heard of these diseases.

Symptoms of EGID can vary depending on the part of the GI tract affected, and may include:
• Reflux that does not respond to usual therapy
• Dysphasia (difficulty swallowing)
• Food impactions (food gets stuck in the esophagus)
• Nausea and Vomiting
• Diarrhea
• Failure to thrive (poor growth, malnutrition, or weight loss)
• Abdominal or chest pain
• Gastroparesis (delayed emptying of the stomach)
• Poor appetite
• Bloating
• Anemia 

Helpful Key Words / Acronyms

Annabelle's Diagnosis
EGID - Eosinophilic Gastrointestinal Disease
EoE / EE - Eosinophilic Esophagitis
EGE - Eosinophilic Gastroenteritis
EC - Eosinophilic Colitis
GERD - Gastroesophageal Reflux Disease
FTF - Failure to Thrive
Low Tone - Low muscle tone

Commonly Used Terms
Scope - Endoscopy. Upper or Lower (Colonoscopy)
EOS - Eosinophils
Relapse / Flare - The worst thing that can happen. A food exposure/airborne allergen/skin contact to an allergen sets the disease into 'attack' mode and begins destroying her GI system with or without our knowledge of it's presence.
Remission - Endoscopy confirms via biopsy that Eosinophil counts are in an acceptable range and disease is no longer active.
G-Tube - Feeding tube that is surgically placed into the stomach.
NG-Tube - Feeding tube that is inserted thru the nose to the stomach.
Allergic Reactions
IgE Mediated Reaction - Immediate reaction to an allergen
Non-Ige Mediated Reaction - Delayed onset / chronic reaction to an allergen
Mixed Reaction - Combination of both IgE and Non-IgE

Allergy Testing
SPT - Skin Prick Test
APT - Atopy Patch Test
Immunoassays - Blood Test
Food Trials - Series of tests, several months long, to determine which foods are considered 'Safe Foods' or 'Trigger Foods'.

Diet
Elemental - Complete diet made up of Amnio-Acid Based Formula, zero foods or flavorings of any kind are allowed.
Elimination - Consuming foods but eliminating the top 6 triggers: Milk, Egg, Soy, Wheat, Nuts/Tree Nuts, Fish/Shellfish

Resources we are using
APFED -
SS - Social Services
EDCD - Ederly / Disabled Consumer Directed Waiver
Lincare - Medical Supplier we use to deliver Annabelle's formula and medical foods.




Here are some helpful links to explain a bit more about Eosinophilic Gastrointestinal Diseases:


Videos of very special kids living with EGID's. They're all so strong, and sweet!


There are so many more if you browse around, these are just some of my favorites.






Quick Facts

What are Eosinophil Associated Disorders?
-High numbers of eosinophils accumulate in body tissues causing inflammation and damage by releasing a variety of toxins
-Diagnosed and monitored by tissue biopsies
-Chronic, auto-immune diseases requiring long term treatment, with no known cure
-Debilitating diseases leading to missed work, school, social outings
-Delays in diagnosis are common

Eosinophilic Esophagitis
-Causes inflammation and damage in the esophagus, affecting the ability to eat or digest food
-Estimated prevalence of more than 1 per 2,000
-Patients may depend on steroids or medical nutrition therapy through a feeding tube

Common Symptoms
-Pain, Swelling, Skin rash, Hives, Choking, Difficulty Swallowing, Nausea, Vomiting  Loss of appetite, stools containing blood and/or mucus, Abdominal cramping, Diarrhea, Esophageal Rings, Motility Problems, Bowel Obstruction, Protein loss, Anemia, Malabsorption, Developmental Delay, Bleeding, Nutritional Deficiencies and/or side effects from medications, such as neuropathy (nerve damage) or osteoporosis (decrease in bone mass)

Treatment Options
-Amnio-Acid Based formula may be needed as a supplement for those whose diets are so limited that they are unable to obtain enough nutrition from food alone. Restricted Diet
-Some primary forms may require the avoidance of all regular foods and complete reliance on an amnio acid-based formula, which may be consumed normally or pumped through a special feeding tube (naso-gastric, gastrostomy or jejunostomy tubes). Elemental Diet
-For those with severe flare-ups or those who experience problems from all foods and formulas, feeding through a blood vessel (TPN) may be the only remaining option.
-Steroid Treatment (swallowed and/or inhaled), Pain Medication, Allergy Medications, Steroid Nebulizer Treatments

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