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Psychological Effects
Physiological Effects
When she was given her first feeding tube 4 months ago, this
was the only caloric intake that she was allowed to have. By
having her on an elemental diet, this allowed her esophagus to heal, and for the symptoms to subside.
The pitfall to being on this diet of Elecare is that insurance did not cover the cans since it was considered
a “supplement”. We had to pay over $1,200 for the first month supply of formula which was a great
burden for a single-income family. Thankfully, after the month had passed, the “supplement” was
deemed to be “sustenance” after many phone calls and e-mails… a moot point considering it was her
only form of caloric intake for 3 months. During that time, she did gain weight, and the symptoms
subsided until this past month. During this year, I have exhausted most of my accrued vacation time
taking time off to help with Morgan, hospital and physician visits.
Outlook and next steps
What is needed?
We need help defraying the expenses that we will be incurring by taking this necessary trip to Colorado.
We estimate that we need approximately $2,800 to cover transportation, food and accommodations.
Any additional funds that are collected would help greatly offset any loss of income as a consequence of
this condition. At this point, any assistance that we get is a huge benefit, when we’ve had so much
working against us in the 12 years that my wife and I have been married.
Respectfully,
Mark Felty
What is eosinophilic esophagitis (EE)?
Eosinophilic esophagitis (EE) is caused by the inflammation of the esophagus by eosinophills. The
diagnosis is made only when other disorders have been ruled out, and there are increased numbers of
eosinophils in the esophagus. Eosinophils are a type of white blood cell which are primarily associated
with allergies but are also found in other inflammatory diseases. The inflammation also causes
additional abdominal symptoms.
How is it diagnosed?
While symptoms may be suggestive, an endoscopy and biopsy are necessary to make the diagnosis.
Patients must have other causes for inflammation excluded before a diagnosis of EE can be made.
How is it treated?
Medical management consists of steroids in either pill or liquid form or topical steroids administered by
a metered dose inhaler. Nutritional management consists of eliminating specific foods that have been
identified as likely allergens, or the use of an elemental formula.
Eosinophilic esophagitis typically affects boys more often than girls. There has been no identified
method to avoid getting it. To date, data suggests that EE is a lifelong disease.
In the Rocky Mountain region, the Gastrointestinal Eosinophilic Disease Program is the only program to
offer comprehensive care for children with eosinophilic esophagitis.
The mission of the Gastrointestinal Eosinophil Diseases Program is to improve the quality of life for
patients and families affected by EGIDs. The GEDP offers a comprehensive evaluation for patients
suspected of having EGIDs and for children who have a previously established diagnosis.
- Medical records
- Pathology slides
- Endoscopic procedures
- Allergy tests
A multidisciplinary evaluation is coordinated by a physician assistant and nurse and may also involve
board-certified pediatric gastroenterologists and allergists, nutritionists, and feeding specialists when
appropriate. Specialized social work services as well as psychological services are readily available.
Additional testing may need to be performed including endoscopy, allergy testing and radiographic
analysis.
Anticipated expenses
Depart Oct 16, 2009 Return Oct 28, 2009
Airfare = $228.01/person + $21.20 taxes & fees + $16.00 insurance = $795.63
Hotel = 8 nights $679.92 + $83.97 tax = $763.89
Transportation = 12 days ground transportation @ $40/day = $480
Food = $600
Incidentals (parking, gas, etc) = $120
Estimated Total = $2,759.52