We at FPIES UK asked our support group members to give us an insight into life with FPIES and how FPIES UK has helped them and Their children
"When Alfie arrived into our life 15 months ago we didn’t know a lot about allergies, we didn’t realise the profound effect they have on a child and it’s family’s life. We learnt soon enough! It’s been a difficult journey one where diagnoses and support have not come easily. We are still on that journey and we are still seeking answers. We can say at the moment though that our son is well, he may only be able to have Neocate and 6 foods but for now he is well! This would not be the case if we had not discovered
FPIES UK, their advice and support has been invaluable. From food trial advice to how to get the best from hospital appointments their practical and emotional support has meant the world to us and we don’t know where we would be without them."
"FPIES it's a strange one although I am pleased we have diagnosis and I am not loosing my mind, it's frustrating. The constant worry, the fear us parents go through, along with the pain and frustration our children go through. The dreaded food trials, constant sick and sore bottom. Isolation, not being able to go to children's parties or constantly supervising your child whilst at soft play or playgroup incase the dreaded allergen comes into play. His bravery and courage has amazed me, he's the most loving, kind and gentle little boy, I am welling up just writing this. I myself had never heard of fpies before my son had multiple allergies and became limp, and unconscious, vomiting blood in soft play finding myself having to give my one year old CPR was the most horrifying experience of my life. It was then after my son was diagnosed at one year.
The support group has been amazing. Thank you all so much."
"Each new day presents a new challenge, one that is manageable or one that is exasperating. Either way, we face it with the hope that soon, very soon, our little ones will bid farewell to FPIES. In the meantime, FPIES UK is our life-tool and thank you to the health professionals that actually get-it!
"Georgia-May is soon to be 1. She is a gorgeous, happy amazing little girl. To look at her you wouldn't know that anything was wrong. Even doctors struggled to believe me. This website and Facebook group has been a lifeline of support. At the moment every bit of food my beautiful daughter ingests can cause havoc within her digestive system. We have rushed to a+e because rice, potatoes and Carobel have left her limp from profusely vomiting with many other reactions.Everyday we watch her like a hawk, her big brothers told to watch her yet its not their responsibility. The constant worry, the constant monitoring of symptoms can be exhausting. Our lives have turned upside down because of FPIES but the love for our little girl, we wouldn't change a minute of the madness."
My gut instinct told me from the early days that something wasn't right with my son Caolán. He had massive issues tolerating formula and we we were advised to wean him - we soon realised that he had severe non IgE allergies. It wasn't until he was 10 months old that we discovered he had FPIES. He had a very severe acute reaction which ended up with him being hospitalised for 8 days. On admission the doctors suspected intussusception of the bowel as his symptoms mimicked this exactly. They then diagnosed him with a gastroenteritis bug but again my gut feeling was something was not right. On posting his symptoms in a support group page online, someone suggested that my son might possibly have FPIES and was informed that there was a UK support group page for mothers of children with this condition. At the time of joining the page, I knew nothing about the condition. I have now been a member for just under a year and to say it has been a lifeline to me is an understatement. The page is just brilliant and all the ladies so helpful with sharing their knowledge and lending support when most needed. Unfortunately, very little is known about my sons condition in Ireland, but through the page and the advice of the other mothers in the UK, I soon learned of a world leading gastroenterologist based in the UK that specialises in gut related allergies so we were able to get our son treatment and help.
It is such an isolating condition and I am so grateful for the support and for the advice I receive from Louise, Odette, Tory and all the fabulous ladies on the page who can empathise and know exactly what we are going through. I am hopeful that things will turn a corner soon and we will start to find some safe foods. But in the meantime - I am so thankful for my gorgeous, intelligent and loving little boy who has changed my life completely in every possible way."
"For us living with multiple allergies and fpies has been a real struggle for me first it was doctors telling me there was nothing wrong with Jacob and that he was thriving and doing well but underneath he was poorly. At the beginning we was going through a pack of nappies every day he was vomiting all the time we was finally dignosed with cmpa but once started weaning it got worse we would react to rice doctors told me you cant react to rice we also reacted to veg I got my gp to refer me to the allergic clinic at Sheffield children's and since then we have been told Jacob has fpies as well as multiple allergies but we have also been told he has chest problems and has had scopes as well its been a long year but FPIES UK has helped me understand and work with my sons condition and help educate other people"
"Olivia is nearly 2 and Maddie is 8 months. From when Olivia was just a few weeks old we knew something wasn't quite right, she screamed uncontrollably for hours a day, was very sick and flitted between constipation and diarrhoea. we had countless visits to the GP and got nowhere. Eventually we were referred to our local hospital who still did not pick up 'allergies' until she was 1. Olivia's younger sister Maddison also suffers the exact same symptoms and we haven't yet been able to find any food she can tolerate. In my experience GP's and even paediatricians do not have enough awareness of food allergies and unfortunately Olivia has been let down. we are now hopefully on the right road to getting a diagnoses and effect treatment/ plan for both girls.
A few months ago I found FPIES UK through my desperation for answers and advice. The support page has been invaluable to me with so much being offered. Being able to speak to other mum's going through similar situations has really been a life saver for me. Thank You to all who have helped supported and offered advice so far! "
I found my way to the FPIES UK site and the support I got from them has been amazing. The site has so much information on it. The group have been my guardian angels over the past few weeks. Any questions I have had - morning or night, someone would always take the time to offer advice or share ideas. We are all parents who are afraid to feed out kids - we don't know what food is safe and the only way to find out is trying - and sometimes failing."