Living with EGID
Determining what foods are safe for people living with an EGID is not an easy process, they may be allergic to any number of foods and in some cases all foods are avoided. These patients are not text book cases and it is more than likely to be a long road followed with your allergist, doctor, gastroenterologist, pediatrician and dietitian to try to work out the puzzle of you/your child's allergies.
It can be very useful to complete a food diary listing all foods that are eaten and any symptoms experienced. Some suggestions for food diaries are using a week to an opening diary from a newsagency or an electronic version like this Food Diary template which can be modified to suit individual needs. There are also some great Food Diary apps you can download like the Easy Diet Diary.
Grocery shopping can take twice as long as it is important to read all ingredient lists carefully for allergens - and these are not always easily identified. Allergy & Anaphylaxis Australia provides some great allergen cards to help you to decipher the ingredients panel - they can be accessed directly from these links:
milk eggs soy wheat peanuts tree nuts shellfish fish
Please help us to encourage Australian hospitals to have allergy friendly menu items and snacks in their cafeteria - download this template - Letter to hospital regarding food menu and send it to your local treating hospital.
A lot of kids with an EGID are fussy eaters and can be sensitive to texture and temperature. Swallowing issues are a common complaint so it may be necessary to puree food in somes cases. It is possible that a good speech pathologist, experienced in such matters may be able to assist with feeding, sensitizing and swallowing techniques. An occupational therapist may also be able to help. See our Mealtime Tips page for some ideas.
You may wish to print out and complete our Medical Alert Information Sheet, designed as a resource to inform family members and carers about your child's EGID condition, allergies and any helpful information that may assist them in caring for your child.
Coping with EGID
Cincinnati Children's Hospital Medical Center website provides some useful information that may help in your journey of caring for a child with an EGID:
Cincinnati Center for Eosinophilic Disorders
Psychological Effects of Eosinophilic Disorders
There are also some excellent factsheets on various topics from The Children's Hospital of Westmead website.
Seeking Assistance
The Medicare Safety Net provides families and individuals with financial assistance for high out-of-pocket costs for out-of-hospital Medicare Benefits Schedule (MBS) services. Once you meet a Medicare Safety Net threshold, you may be eligible for additional Medicare benefits for out-of-hospital MBS services for the rest of the calendar year. Also available is the PBS Safety Net if you and your family need a lot of medicines in any year. If you (or your child) are taking more than five regular medicines and/or you meet the eligibility criteria you can ask your GP for a referral to the Home Medicines Review (HMR). A program designed to assist individuals to maximize the benefits of their medicine regimen and prevent medication related problems.
You may also be eligible for health care assistance for visits to extra care providers like speech pathologists and dietitians through GP Chronic Disease Management plans like the GP Management Plan (GPMP) and Team Care Arrangement (TCA). Visit the Department of Health and Ageing website or ask your General Practitioner for more information.
If you don't live close to a hospital that is managing your child's health condition then check out your state's health department website for information on travel and accommodation subsidies - NSW and QLD forms can be found from these links.
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. You may also be able to apply for Carer Payment or Carer Adjustment Payment. Talk to your doctor and visit the Department of Human Services website for more details. If you are having difficulties getting your claim approved, information on Carer Allowance can be found on the Australian Government website - Guide to Social Security Law and Disability Care Load Assessment (Child) Determination 2010. Another option is to talk to your Member for Parliament to request eligibility for EGIDs be investigated. You can download our template letter - Letter to MP regarding Carer Allowance and send to your local MP. You can read the response letter ausEE received from the Department of Families, Housing, Community Services and Indigenous Affairs here.
Does your child use a feeding pump for tube feeding or use other essential medical equipment? If so, you may be eligible to apply for an annual payment. The Essential Medical Equipment Payment is an annual payment to people who experience additional increases in home energy costs from the use of essential medical equipment to manage their disability or medical condition. Find out more from Department of Human Services. If you live in NSW you may also be eligible for the Family Energy Rebate - visit the NSW Government website for more information.
There is useful information about raising a child with a disability on the Raising Children Network website.
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Page last modified: 26 May, 2017