Our Stories

Maggie's Story


Maggie was born 2 weeks early by c-section, I had an horrendous pregnancy in and out of hospital with sickness and on anti-sickness medication for 22 weeks ( it was either that or lose the baby as I was needing iv fluid constantly without them) I often wonder if this is where FPIES originated from??

 Maggie was our 3rd child, a little girl to complete our family, with 2 almost teenage brothers, I thought this is going to be easy, lots of help at hand. How wrong was I?!

Maggie was ebf and would scream and scream after feeds, I was told severe colic, she would have up to 20 dirty nappies a day, she never slept, just screamed  looking back I knew something was wrong but when u are exhausted u just listen to the doctors. Then the distended tummies started, it literally looked like my 5 week old baby was pregnant! The Drs ruled out a blockage and put it down to dairy allergy, I removed dairy from my diet and she was a different baby! I had to do the same with eggs, all nuts and soy too.

Drs suggested I stopped feeding and move to a specialised formula, we trialed 7, 4 put her in hospital with classic FPIES reactions and the other 3 I couldn't get her to take. Plus I didn't want to stop feeding my 5month old baby anyway! Then the decision to try soy based formula resulted in an ambulance to hospital after the worst sickness I have ever seen, loss of consciousness, shock and eventually turning blue...just a coincidence they said! So a month later we did an ofc in hospital with the same result, that was the day we got our diagnosis!

 Since then we trialed a new food each week in hospital with our fantastic allergy nurse. Maggie reacts to chicken, banana, corn, soy, dairy, eggs and mango, (and nuts through my milk) but has almost 20 safe foods (mainly fruit and veg) but we do have oats, wheat, lamb and most recently cod

We now trial food at home, which takes up so much of our time and at times makes me so overwhelmed and stressed.

She is 17 months old now...still breast fed with me on an elimination diet. Still doing relentless trial, but with more passes than fails. FPIES seems to have taken over our lives! She has never slept through the night and doesn’t nap either.  I had to leave my job as a Primary school teacher as pumping, teaching, stress etc was just too much. My eldest children have become fpies specialists too, even knowing what to say to the ambulance crews etc. Their lives have changed tremendously too, they have to watch everything they eat now too.

 Now Maggie is walking it’s a whole new ball game and I feel slightly overwhelmed by it all again! We were in hospital again recently as she had reacted to something...I have no idea what. We put her to bed at the normal time and an hour later we heard the familiar noise...then found her covered in sick..... Back to the drawing board! DRs saying “put it down to experience and try and move forward, u might never know what it was" don't think they really understand the stress related to this condition !! Or the guilt associated with your little one accidentally eating something that might make her ill!

Having said all of that my beautiful Maggie is a ray of sunshine who I could not imagine being without! She has enriched our lives immensely and managing her condition has made me understand a whole new way of life, I have gained such an appreciation of what allergy parents go through on a daily basis. I am also so grateful for the support of the FPIES UK Facebook group, who I would be lost without.

Joseph's Story

 

Joseph was born in Autumn 2012 by C-section and was breast fed from birth. He was given antibiotics for the first 3 months of his life for a suspected kidney problem. From about 4 weeks old he started vomiting large amounts up to 6 times a day and his skin was awful. He was very slow to gain weight and dropped from 65th percentile at birth to just above the 2nd at 4 months. When i took him to the GP to say i was concerned about the vomiting and slow growth, the GP said he probably had reflux but was not in pain so no medication was needed. He was diagnosed with eczema at 12 weeks. We saw a dermatologist who did some blood tests which showed up an egg allergy but nothing else.

We started solids at 6 months and his vomiting got a lot worse and he developed a constant rash on his face and neck. His sleep was awful and he would often scream for long periods pulling his legs up.

At 7 months we gave him chicken, he was grumpy and  vomited a bit the first three times but this was not unusual and i didn't link it to the chicken. Two weeks later he had his first acute reaction. Two hours after eating some chicken he started to vomit in his cot, vomiting many times until he brought up bile, afterwards he was pale disorientated and really sleepy, I thought it was a tummy bug. A week later chicken again, the same thing and he went really blue and stayed that way for days. It took a further episode for me to realise it was chicken, i googled 'chicken allergy' and FPIES came up, i was sure this was what my son had. I went to my gp told him i thought it was FPIES and he actually laughed at me, but did eventually refer us to an allergist, but there was a long wait.

By 8 months I suspected Joseph had a problem with many foods, each new food i gave caused him to vomit two hours later, but the picture was clouded by me breastfeeding so we started aptamil pepti formula.

At 10 months Joe was a mess, daily frequent vomiting, horrible rash and eczema and screaming most nights. So i made the big decision to stop all food (giving just prescription formula) and his symptoms disappeared completely! My son did not have reflux, colic or infantile eczema he had food allergies.

Three weeks later we saw the allergist who said it was not FPIES as Joseph was not 'sick enough'. He put Joe on 3 months gut rest and we were only allowed to feed him rice and beef which we believed were safe from previous trials. The dietitian changed Joe over to neocate lcp formula which was fine, she also gave us neocate spoon but it made him vomit and gave him diarrhoea. We continued for 4 months on a diet of neocate, rice and beef. He was so much happier and healthier. He started sleeping through the night and gained weight rapidly.

We went back to the consultant in October and he said he didn't understand Josephs’ reaction to chicken as his test was negative. I mentioned FPIES again and he didn't know what it was. This is the same doctor who told me 3 months before Joseph didn't have FPIES. He conceded he was unfamiliar with it and then had us wait in the waiting area whilst he did some reading about FPIES on the computer. 

When we returned he said he had done some reading and said it could be FPIES. We discussed food introductions and he said he just didn't know, but we should not try any previously reacted to foods until after he is 2, maybe longer. He booked us in 6 months for a revisit and said to contact him if we have problems. 

After that appointment we decided to go private and Joseph was finally diagnosed with acute FPIES to chicken and chronic FPIES/ non-ige allergies to many other foods. During the last 5 months he has been on a diet of neocate, rice and beef. He has had no rashes, vomiting or reflux and sleeps through the night. At 14 months old we are now starting the long process or trialing foods, 1 per week to try and add to Joseph's diet. It is becoming more clear that Joseph is not a textbook case of FPIES, but is FPIES + IgE and Non IgE allergies. We are currently awaiting a gastroenterology appointment where Joseph will undergo a procedure called endoscopy to see if he has EoE (eosinophilic Eosophagitis) alongside his FPIES. 

We are now 2 months into our food trials and I must say it is emotionally, mentally and due to many sleepless night, physically exhausting. But for all the failures each pass is a huge victory which we celebrate. 

 

Max's Story


Hi there, we are a British family living in Hong Kong but our second, and youngest, son Max was diagnosed with FPIES at 7 months in the UK.

We were diagnosed by a great doctor called Dr George Du Toit who is very open to FPIES and said that he sees more and more cases every year in the UK. He also said that the most support and information that I would get would be from other mums dealing with the illness which is totally right.
 Our FPIES journey started when Max was very little, although I didn't realise it. As a baby, Max just seemed to be very preoccupied and always had terrible nappies - his poos were full of mucus, bright green and stringy. It sounds silly but he wasn't interested in the world at all and I felt that all his energy was being channelled into something else - I now believe digestion. He was a terrible sleeper and needed comforting through the night. He would wake up not hungry, just sad. I always felt it was something I was eating (he was exclusively breast fed as he wouldn't take formula in a bottle at all) so I reduced my dairy intake but things only got marginally better. I then got a gastric bug and could only eat rice, apples and toast. Magically Max was a different baby - he slept, he seemed more alert and was just a happy little guy. I changed my eating habits - and decided that even my last dairy in my cream cheese and sweet potato dinners had to stop and his sleep was so much improved. I thought the culprit was the cream cheese...I was wrong!

We started weaning at 5 1/2 months and all was going well. I was following Gina Ford and so he was having oodles of sweet potato. Two weeks in we had our first F PIES reaction - 2 hours after eating....severe vomiting till bile, pallor, cold, passed out in my arms but I thought it was a tummy bug as he was drinking my milk 3 hours later and right as rain. I gave him 2 days off food and then started the sweet potato again - 2 hours later he was so sick. I instantly thought it was the food batch and that it was actually food poisoning...I felt AWFUL! I gave him a week off, made a new batch of sweet potato (!) and he ate it but was even more sick again, with hindsight I should've taken him to hospital as each reaction had got worse. I googled and FPIES came up. I obviously pulled sweet potato and proceeded with caution, only suspecting FPIES. Luckily he had been having baby rice and cereal and so I felt he was safe on those and we continued with the fruits he seemed ok on. His next vomiting came on his 5th ingestion of bananas. I was then convinced it was FPIES (I did blood tests in HK before we left for our hols) and he was then diagnosed by George and we have been trialing two foods a month since...so far with no more fails.

I know I am SO lucky to have a collection of safe foods for Max but still feel the fear every time I try to work out what to trial next....it is awful seeing him be so sick.
 

Jacob's Story

 

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


Update on jacob's story 


Jacob is alot better since we got seen at sheffield he goes quite regular to see them. Hes still got a mix of non-ige and fpies reactions but his list is getting smaller every month Jacob will be due to go into hospital soon for a milk trial after not reacting to abit of chocolate it scares me as a mum though incase he does react again. We still have issues surrounding is chest and bowels but they are being monitored carefully for any sudden changes all in all im more positive now and i now know how to manage my sons conditions
thank you all at FPIESUK and your support group

Freddie's Story

 

Freddie was born naturally two days late. He was a very happy and content baby but had severe eczema. His eczema was so severe he looked like a burns victim. After numerous trips to the GP they told me it was just eczema and he would eventually grow out of it. It wasn't until I saw a different health visitor who was positive my son had a milk allergy, she herself had a child with dairy allergy. After this we decided to go private as his skin was awful. We saw a consultant who finally agreed that he had a skin allergy to dairy and gave us Neocate. Freddie's eczema practically disappeared over night and things settled down or so we thought!!!!

When Freddie was 6 months old I accidentally gave him a banana porridge that contained semi skimmed milk, this is something I don't think I will ever forgive myself for. He usually had banana porridge but I had picked up the wrong make without realising. Two hours later he started to projectile vomit, as Freddie has an older brother I thought he might have a bug (as at this point I didn't realise I had given him the wrong porridge) so I put him to bed after he stopped being sick! When I woke him up an hour later to check on him he was blue, unresponsive and had the most mucusy nappy I had ever seen. I immediately put him in the car and took him to A and E. As soon as I bought him in they took him straight to resus and I immediately realised that something was very very wrong. They worked on him for about an hour trying to rehydrate him but at this point his body was too shut down to find a vein and they had to drill into his bone. At some point I was taken aside and told our son was extremely poorly and in order to stabilise him they had to put him on life support, he was transported to St Mary's Paddington and we didn't know if he would live or die, our worst nightmare had come true. He was on life support for five days by the third day we had realised I had given him the wrong porridge and was visited by an Allergist, Dr Gore, she immediately knew what was wrong with Freddie and we heard the word FPIES for the first time.

Since diagnosis life has been a bit of a roller coaster. Two weeks after we got home from hospital and I had started to slightly calm down when I was advised to give him red meat as his iron was depleting, two hours after he had eaten lamb he started being sick and went the blue colour. I took him straight to A and E where they gave him intravenous fluids and within a couple of hours he was his old self. 

Now as a precaution the weaning process now was done in London in a hospital room where he was given a small amount of the food we were trialing. Two hours later a little bit more, then two hours later a bit more. The days were extremely long and stressful but worth it as he passed food after food. He stayed clear of any meat that was either milk fed or produced milk as a precaution. We eventually trialed Beef when Freddie turned two and it was a massive fail, he was incredibly poorly and took ages to recover. We have now decided to start trialing again just before he starts school when his four years old as it's too much of a trauma on his little body. 

Life can be very challenging at times as I feel I can never relax when we are out, I'm always watching him and others! I can spot a bag of wotsits from a mile away!!! Lol !!!! His older brother is amazing and knows exactly what Freddie can and can't have. Recently though I'm not as anxious, Freddie is really starting to know what he can and can't eat. If FPIES doesn't go away anytime soon I know it's something we can live with. Freddie is such a beautiful and funny boy and I'm not going to let his allergy define him xxx


If your child has been diagnosed with FPIES and you would like to share their story  and picture please email  enquiries@fpiesuk.org and I will try to add as many as possible. 

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