Our
STORIES.
Maggie
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.
“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
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 6.5 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 phoned the out of hours gp and was told they thought it was a tummy bug. 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. 2 weeks later chicken again, the same thing and he went really blue and stayed that way for days. It took a further episode and hospital stay for me to gert any help, the GP eventually referred 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 hours later, but the picture was clouded by me breastfeeding.
At 10 months Joe was a mess, daily frequent vomiting, horrible rash and eczema and screaming most nights.
We saw the allergist who said it was not FPIES as Joseph was not 'sick enough'. He put Joe on 2 months gut rest.The dietitian changed Joe over to neocate lcp formula. We continued for 2 months on a diet of neocate, then added 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.
We tried all foods one at a time for the next 18 months, some caused milder vomiting, diarrhoea or bloody stools, millet caused an acute reaction but we eventually had a balanced diet.
We trialled chicken in hospital at 2.5 years of age and it caused diarrhoea 6 hours later but he tolerated it a few months later.
Update: Joseph outgrew all of his allergies by age 4. He is now at school and doing great!
“But for all the failures each pass is a huge victory which we celebrate.”
-Joseph’s mum
Freddie
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.
“ 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.”
If your child has been diagnosed with FPIES and you would like to share their story and picture please email enquiries@fpiesuk.org.