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