FPIES is a poorly understood condition, but there is help out there if you are willing to fight for it.
Food allergies, especially to multiple foods, can be expensive.
At the most basic level there is the buying of special foods and providing three meals a day that are completely different to your family. Then there are the trips back and forth from hospital and the parking fees. At its worst you may have given up work to help manage your child’s condition, gone part time or missed regular hours due to your child’s reactions. All or any of the above can put a great financial burden on already strained resources.
Whilst each child with FPIES is very different, many will have needs that require 'extra care', and so may qualify for extra help such as Disability Living Allowance. It is unfortunate that some valid requests for DLA are denied due to a lack of understanding, however if you feel strongly that your child meets the criteria for help there is an appeals process. We would recommend that you get as many of your childs health care team on board to support your application, letters from health visitors, gp's and consultants are invaluable. If you do decide to appeal many parents have found it best to do this in the form of a letter rather than complete the application forms again as they are not very well designed for explaining FPIES.
FPIES can be found in the DWP A-Z of child medical conditions however the majority of staff dealing with claims fail to find it, it may be best to include a reference to it in your application or appeal. FPIES can be found on pg 66 under the allergies and anaphylaxis section here
For those children who qualify for the highest rate of help, you as their carer may also qualify for carers allowance.
Children who qualify for the middle and higher rate of help can also apply to receive the 15 hours free childcare (usual available to all 3 year olds) from age 2.
Healthcare professionals such as health visitors are mostly unaware of FPIES. You may find that you get more appropriate support once you have educated them on the condition. It is worth sitting down with your Health Visitor and discussing the impact the condition has on your lives and directing them to this website. In particular i would ask your health visitor to watch the video of an FPIES reaction and get them to ask their colleagues to watch too.
Most people, even close friends and family will not understand what it is like to care for a child with FPIES. The stress that comes with food trials cannot be understood. For most parents watching their child try a new food is no big deal, or even exciting. For an FPIES parent it can be terrifying waiting hours to see if the vomiting or diarrhoea will start, not wanting to leave the house in case they vomit in the car seat or pushchair and choke. Worrying when you put them down for their nap in case something happens. That is why we set up the FPIES UK Facebook support group, only other parents going through the same thing can understand fully, please join if you need any support or have questions. You do not need to have a diagnosis to join.