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Someone lovely had baked homemade cakes for the children, which they loved. The children were all walking around eating the cakes (and why shouldn’t they?) It’s a great experience for them...but for me and Maggie, it was a nightmare. Cakes containing dairy and eggs (both of which have caused reactions leading to hospital for Maggie) were everywhere, on the floor, the slide, on toys...everywhere!!! Maggie is now two and a half, we still face the same challenges. However, I no longer feel so alone! Maggie is a beautiful ray of sunshine, who I could not imagine being without. She has enriched our lives immensely… Some days are still very hard and the nights can certainly be very long. But now on those day, I know where to go for support, understanding and help. I now feel informed, empowered, understood and not nearly so neurotic! What is FPIES? FPIES causes profuse vomiting and lethargy, these children vomit to the point of bile and become very sleepy or even unresponsive, typically 1-2 hours after the ingestion of the causal food. In 20% of cases the child will also go into shock. Other symptoms include pallor, low blood pressure and low temperature. 25% of children may also have profuse diarrhoea. The only current treatment is the replacement of fluids. Some anti-sickness drugs (such as Ondansetron) seem to be helpful, however more research in this area is needed. Many of the foods that cause FPIES reactions are considered hypoallergenic. Rice, oats, chicken, turkey and sweet potato are common triggers along with cow's milk, soya, eggs and banana. It should be noted that ANY food can cause a reaction and without a test to determine which foods are safe, FPIES parents are forced to use a trial and error approach. The only way to find out if a child is going to react to a food is to feed it to them and wait! The pressure and guilt this places on a family is immense. The guilt you feel having fed your child something that has made them ill, is extremely distressing. |
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FPIES is not fatal but is very scary! Many parents have no idea what is happening to their previously well child. The whole experience can be extremely overwhelming and frightening for the whole family. Because of the violence of the reaction, FPIES has a dramatic effect on the families' quality of life and it can have numerous behavioural effects on the children. Children also often have regular spells of stomach pain and distension, which can repeatedly lead to poor sleep and increased night waking due to discomfort. It is not uncommon to visit a primary care professional who is unaware of FPIES, its presentation and treatment. FPIES is to non-IgE food allergy what anaphylaxis is to IgE food allergy – the most extreme form of the condition. Hopefully by spreading awareness, FPIES will become more widely recognised and understood. |
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More information from FPIESUK. Written by Odette Wilcox, mum to Maggie 2.5 (diagnosed with FPIES at 6 months old) April 2015
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