ausEE Inc.

a charity dedicated to improving lives affected by eosinophilic disorders

Frequently Asked Questions

1. Could my child grow out of their EGID/EoE?

A. The long term prognosis of EoE and other EGIDS are largely unknown. Some children can outgrow EoE, whilst in some the number of foods tolerated improves with time, whilst in others, EoE remains a chronic condition requiring some food restriction +/- medications.

 

2. What is the possibility that siblings or other family members will also have an EGID? 

A. Recent research has found that there is a genetic component to EoE. Hence some children with EoE have siblings or parents also with EoE.

 

3. What are the treatment options?

A. Treatment options are different for every patient and must be discussed with your doctor. These treatment options may include (but are not limited to):

  • An Elimination diet is one common treatment option. It is important to speak with a qualified Allergist/Gastroenterologist, and have a Dietitian experienced in food allergy before undertaking an elimination diet. The elimination diet is tailored to the individual. Some individuals may be able to identify specific food(s) that trigger symptoms, but others cannot. More than one food may be involved. Some doctors may suggest the patient remove the top 8 food allergens implicated in EoE (milk, egg, soy, wheat, peanut, tree nut, shellfish and fish). Another option may be removing food(s) the patient has tested positive to via skin prick testing, specific food IgE testing and/or atopy patch testing. In EGID it is not uncommon for allergy skin prick testing to be negative. This means that a food is at low risk for immediate (minutes to hours) reactions. Food proteins can however stimulate inflammation over days to weeks and this may require other tests including exclusion periods. 
  • An Elemental diet consists of only a special medical food called an elemental formula, which contains amino acids (the building blocks of proteins), fats, sugars, vitamins and minerals. They provide all the nutrition a person needs if enough is taken. Some individuals need a feeding tube to ensure they are getting enough of the formula or to give the oesophagus a rest. The patient is placed on the formula alone for a number of weeks, and will then have a repeat endoscopy to see if there has been improvement. If the condition has improved, then foods are slowly introduced back into the diet and a repeat endoscopy is often performed to ensure ongoing control with food reintroduction.
  • Medication can be used alone and/or along with dietary management. The most common medication used is a corticosteroid spray used in asthma. However, the spray is not inhaled but swallowed, so that the oesophagus is coated with the medication. Acid reflux medications may also be used. The doctor will determine which, if any, medications are appropriate for each individual.

 

4. Should the aims of treatment be eosinophil reduction or symptom reduction? 

A. Both. 

 

5. Should siblings be routinely screened whether they display symptoms or not or should siblings be screened even if they only display minor symptoms of an EGID (e.g. indigestion abdominal pain?)

A. Since testing for an EGID is still invasive, each case should be determined with your doctor in regards to testing. Based on symptoms, severity and family history your doctor will determine which test or medications are indicated.

 

6. When should siblings be screened? 

A. Again, this should be discussed with your doctor as each case is different.

 

7. If I have a child who already has been diagnosed with EoE who had reflux as a baby, and I have another baby who presents with reflux from birth, is it best to have the second child put on Losec or another reflux medication as soon as possible to reduce the likelihood of damage leading to EoE? 

A. If a child has reflux - treat as you would normally and consult with your doctor. A small percentage of patients with EoE respond to reflux medication alone.

 

 

8. How can pain in the oesophagus be managed (i.e. painful swallowing)?

A. See Question No. 3

 

9. What are the long term side effects of using swallowed steroids or reflux medicine on a daily basis?

A. The long term side effects of swallowed inhaled corticosteroids are not clear, however, the drug undergoes rapid breakdown by the liver and studies have shown the amount of absorption from this route is extremely small and unlikely to cause any adverse effects. To date, long term studies on anti-reflux medication (proton pump inhibitors) have reported no increase in adverse effects.

 

 

10. Who would you expect to be the primary caregiver and what specialists would we need to see (and for what)?

 

A. This depends at what stage you or your child is of treatment, but typically the following are often involved:

  • General Practitioner (GP or Paediatrician): Each patient must first be evaluated by their GP or Paediatrician. If the Physician finds its necessary, they may refer you to a specialist. Once diagnosis is made the GP or Paediatrician may be the primary caregiver if the condition is under control.
  • Gastroenterologist: This specialist will be contacted if the GP feels there is a possibility of an EGID. It will be the decision of the Gastroenterologist to order further tests such as an endoscopy, Barium Swallow or pH study. If an EGID diagnosis is made, the Gastroenterologist may be the primary caregiver until the disease is under control.
  • Allergist/Immunologist: This specialist will work closely with the patient and Gastroenterologist in determining a treatment action plan and following up with allergy tests such as Skin Prick Testing or Patch Testing. They may also be the primary caregiver.
  • Dietician: Routinely a dietician is assigned to help manage a patient's dietary requirements and works in conjunction with any or all of the above.

 

11. What is the prevalence of EoE, EG and EC?

 

A. The incidence (i.e. number of new cases over a period of time) of EoE in Australia is not clear. However, in one study from Western Australia, the number of documented cases to one hospital increased over a 10 year period from 0.05 per 10,000 children (1995) to 1 per 10,000 children (2004). An increase has also been seen in the USA (in one study from 1 per 10,000 in 1999 to 4.3 per 10,000 in 2003). The exact incidence and prevalence for EG and EC are unknown but they are considered to be less prevalent than EoE, which is the most common form of EGID.

 

 

12. If your child is reactive to almost all foods and primarily elemental should you keep trying new foods (causing pain and food distrust) or just live with the few you have?

 

A. This is a personal decision that you will have to discuss with your primary caregiver.

 

 

13. Is there a standard national or Global treatment plan?

 

A. Although EoE has reached greater recognition in the past few years, there is currently a gap in accepted standard treatment standards across the world. In addition, limited randomized controlled studies have been completed in order to determine best practice. This being said, current recommendations include dietary restriction and/or medications as outlined above.

 

 

14. Are we eligible for a health care card, is it worth applying?

 

A. Depending on your child's individual medical needs and the level of extra care required, you may be eligible for a Carer Allowance (caring for a child under 16 years) through Centrelink. This may include the provision of a health care card for your child. Talk to your doctor and visit the Centrelink website for more information. 

 

 

15. What drives the need to tube/peg feed and is it something we may need to expect?

 

A. Children and adults who need elemental formula may have a difficult time drinking enough of it. To maintain proper nutrition, some require tube feeding to allow the formula to go directly into the stomach. Tube feeding, also called enteral nutrition, is a way food can get into your body if you are unable to eat or unable to eat enough. Food in liquid form is given through a tube into the stomach or small intestine. Tubes can be placed in different places along your gastrointestinal tract:

  • A nasogastric tube is a tube that is put up the nose and down into the stomach.
  • A gastrostomy, sometimes called a PEG, (percutaneous endoscopic gastrostomy) is placed in the stomach during a procedure. Some PEG’s have a tube always hanging out, and some replacement PEGs are flat (‘profile’, or ‘buttons’).
  • A feeding jejunostomy is placed in the middle part of the small intestine, called the jejunum, during surgery.

 

16. What rights do we have when our children start day-care/school i.e. need for formula, more than just regular scheduled breaks?

 

A. Each child and each school has different policies regarding children with special needs so it is best to have a conversation with the school principal, nurse and teachers. Some find it helpful to inform the other parents as well. Some General tips are: 

  • Supply school with medicines that may be required throughout the year (suggest putting in a large red pencil case or bum-bag so easily identified). Schools will usually require a form to be completed (from the school) for each medicine and each medicine will require pharmacy label attached with your child’s name (even for non-prescription items like antihistamines).
  • Before school starts discuss with your school principal/deputy principal, class teacher and teacher aide any extra care requirements.
  • It may be a good idea to arrange a visit to your child's class when school starts to talk to his/her class mates about your child’s allergies to help them understand – for younger students you can read a book from our suggested Books page or have your child bring it to show and tell.

 

17. How do we interpret results e.g. what number eosinophils is considered not a problem, what is average and what is really bad?

 

A. Generally any biopsy result with 20 eosinophils or higher per high power field renders a diagnosis of an EGID. Higher numbers do not necessarily mean the disease is worse or vice versa. The gastroenterologist will examine the area during the procedure and also investigate how the area appears visually.

 

 

18. Are there other problems likely to arise from EoE long term e.g. polyp's, issues with stomach etc.?

 

A. To date, no studies have shown an increased risk of malignancy in patients with EoE, but there is evidence that uncontrolled chronic eosinophilic inflammation may eventually cause narrowing of the oesophagus.

 

 

19. Is there a list of foods that are normally considered less likely to cause a problem?

 

A. In those with EoE where food(s) are thought to be important triggers, most fruits and vegetables are thought to be generally safe, although some suggest potato and corn may be triggers in some individuals. The exclusion/inclusion of food(s) is potentially complex, and dietary manipulation is best discussed with the primary care physician (e.g. allergist, gastroenterologists often with dietician assistance).

Page last modified: 19 August, 2011