Our Facebook group members discuss their experiences of living with FPIES and how it affects the relationships with those around them.
"I have found that my relationship with my FPIES child was more intense somehow. I suppose because I fed her for nearly 3 years. But I worried constantly about her. Felt an awful pull when I was away from her ( even during a quick visit to the shops, I would feel panicked and uneasy )
I think we both ended up with attachment difficulties due to FPIES. This is getting slightly easier now she is getting older.
My relationship with my older children changed also... I expected them to grow up earlier than I would have before Fpies entered our lives... They both had and still have a role for when she is having a reaction. One puts the last things in the bag and phones grandparents. The other deals with the ambulance then helps to clean up! More than should have been expected of 12/14 year olds. Not so bad now they are 15/17.
I didn't have the time to spend with them either... I feel that they have missed out on such a lot. School work support, meals out, the freedom to have friends over etc. Saying that, they are the loveliest boys ever and I'm very proud of them indeed"
"My FPIES son and I are very close, I am with my other children too but I think about him constantly, worry about him and we've spent do much time just me and him I know him incredibly well. I can predict an infection or a reaction before I see symptoms. I'm tuned into how he looks, how he acts, even how he smells. It's almost primal I think. I'm aware that there were times they without me acting quickly he might not have come through...it's pretty scary and has added another level to our relationship. But it's cost me too, I'm not always the mum I want to be to all the kids as I'm so tired, preoccupied, snappy at times. They had to get used to be just disappearing and I haven't dealt with it well always mainly because of the demands of my son with FPIES. I'm trying my best to make it better and hope CBT helps me a little. God knows what they have been through and what their little minds have made of it. My relationship with my husband has suffered because he's rubbish at all the medical stuff, he can't cope and doesn't always make enough effort. I also can't relinquish my FPIES child's care to him very well so it's hard and stressful on the relationship. We've nearly spilt up many times"
"I went through a stage of feeling angry and bitter at everyone of my Facebook friends that used to post photos of their child eating food especially during weaning stage. I took it personally
when in reality it was never aimed at us."
"I think easter and halloween are the hardest"
"Halloween last year we were pressured into going trick or treating, little J walked along at the back with his little bucket and I had to pop things in out my pocket. He didn't notice but I felt really sad about it."
"I hated Xmas dinner last year as all my friends were giving there babies a first taste of Christmas dinner and I couldn't ( still can't) it made me so angry and it felt very unfair. Another time my friend sat telling me how difficult it was that her child wouldn't eat for 2 weeks as I was sat holding my LO with a NG tube in praying that a 1oz of milk would stay down!"
"We were just pleased to be home for Christmas Day last year as we were in Christmas Eve and Boxing Day. She peed through her clothes half hourly for several hours on Christmas Day because of the vitamin B12 injections she was having frown emoticon. Hoping this year will be better, and we restart food trials next month so I'm hoping by Christmas she will have at least 1 safe food and be able to sit and eat something that isn't frozen Neocate with us!"
"I totally can relate to all the above! This sounds awful but fpies completely ruined our Christmas last year! I hated it, T was up screaming most of the night so I was tired when the older 2
got up. I coped with that but then my mum going all out to make sure he had a "Christmas dinner" ended in him vomiting every where, screaming and just miserable. It spoiled it for my other 2 and
it just was awful. Also if I get asked once more "haven't they sorted him yet" like it's some sort of infection I think i'll scream!"
"The thing for me Is the more time you find yourself at home, either too scared to go out with the fear of them getting hold of they shouldn't, or the fact that there just not well enough to do anything with. Which then has the affect on your family and relationships with friends as you become withdrawn from day to day life, while friends and there children are enjoying days out without a care in the world, and your just sat at home wishing tomorrow will be a better day. And the immense stress put on your relationship with your partner, him working long hours to keep our family going, and me doing all the childcare on my own to scared for anybody to watch her so I can have a break.."
" I still carry a lot of sadness and in some ways feel that FPIES robbed me of what should have been a very special time bonding and enjoying my very much wanted baby. I had been trying to conceive for 10yrs before she was born. I feel like the first two years of her life were so stressful and challenging due to sleep deprivation and constant illness that I really have very little positive memories of her. I try not to think or dwell on it too much because it brings me to tears. she'll be 5yrs old in January, she is my absolute world but by god do I hate FPIES and the impact its had on our lives."
"A large chunk of the first 5 months with my baby was spent on hospital wards and when we weren't in hospital I was a prisoner in my own home. She screamed in pain for hours on end from the day she was born and it took so long for family members and friends to understand that I almost cut many of them off altogether. My mum didn't understand how bad things were til she took her for the day at 10 weeks old so I could sleep, and dealt with non-stop screaming and bloody vomit. There are many family members who are still yet to really understand how things are for us and I don't know if they ever will. I lost friends because I just had no time for them. I nearly lost my marriage because my husband works a lot and didn't understand why the house was such a mess, why I hadn't even washed..."
"I hate how FPIES has put strain on my relationship with my non FPIES son he was an only child for over 9 years. With so many hospital stays and the fact we can't go anywhere for the fear of food, he has started lashing out in frustration. He is also so worried and scared for her. Tonight when I came home from the hospital, he sobbed and said he wants his mam back and his sister just to better and "normal. I also sat today and watched my nephew same age as G eat so many different bits of food. All I could was wish that she can do the same soon also I wanted to cry my eyes out"
"I cannot be around other babies eating. It gives me a lump,in my throat and i get really emotional, knowing that not only does my baby only has (almost) 3 foods in all the world...that she may never enjoy even half of what the rest of us can eat as an adult...having a baby bag with an epi pen in it scares me so much"
"Yes I can totally relate with what is said above. I feel really upset seeing pictures of people's babies and children eating, especially when they are 6 months and they have a more varied diet than we do and then I feel horribly guilty for feeling that way. Another thing I find difficult is asking friends to be careful around us. I've had to ask friends to wash and wipe up their children when they are running around with food on their hands. I think should they be more conscentious, am I being over the top? Am I expecting too much of them? This also brings guilt...so much guilt! Fun times at the park in the summer when children are running around with ice cream I avoid it's too stressful sitting there watching their every move. Local toddler groups where I know children are walking around with food I also avoid. I used to look forward to childrens parties but now I am filled with dread as I know I am going to be on high alert watching and waiting. So much of life revolves around food you don't realise until you are dealing with allergies like we are.
Another feeling I have is that as life revolves around food so much I feel like allergies are all I ever think or talk about and feel like people probably would wish I'd stop talking about it. It's just all consuming."
"I didn't have Facebook when my 7 yr old was a baby going through the most horrific time weaning and mainly on my own as hubby working. I didn't even know she was FPIES at the time and having a reaction, i am v lucky she is actually alive as i thought she was tired after vomiting and the reason she went to sleep. The hardest thing was having no one to listen to me, friends listened at first but after a while they get bored and it's apparent. The only place i share our hardest times and best times are in groups with other parents who have been the same or similar circumstances. it has been the best form of support, advice and ideas."
"One of the hardest things for me was getting people to listen understand and believe me. This includes family friends and health professionals. Being palmed off time after time was exhausting
and left me feeling helpless alone and like there was no light at the end of the tunnel.
It has also put a huge strain on my relationship with my husband as all our life is consumed in symptoms, doctors visits, hospital stays and an unhappy baby for 80% of the day with constant screaming in pain.
I also get the line 'haven't they sorted her out yet?' from friends and family which gets frustrating.
It's still lonely now even having a diagnosis, due to the lack of awareness out there. Thank goodness I found the FPIES UK group, it has been my saviour."
"I find it annoying when i talk about how hard it has been to get help and other people say 'if i were you I'd have been at the drs ever day and wouldn't have let it drop'. Its easy to say that when it's not you fighting and the rest of life does go on."
" I think I'm very lucky...my friends are amazing and have taken time to listen, support me and try to understand. Some of then still don't really get it completely and it's a bit frustrating at times but they mean well. They cater for him, buy the brands he can have if we meet for lunch or at parties. My parents are fabulous, my dad can be a bit pushy in asking whether I try him on new foods. But they have all seen me on my knees, seen L in pain, his tube, the change we've had to cope with. Some have equally difficult challenges (eg young diabetic child) which I think helps the understanding. We go out, we socialise, it's hard and I'm anxious but we go where we are comfortable. I never thought my life would be as hard as it is, that I would feel the pain and heartache I have because of fpies and allergies and his other issues. But I have support and that's my life line. My husband and I have not had a steady ride through this and my other children have suffered for sure due to the attention L needs...that breaks my heart"
"FPIES has taken a tole on our marriage and defo my older kids been effected. Especially my eldest. He started refusing to go to school. Because so withdrawn etc it wasn't until he broke down crying at me saying he wants to stay at home and help me because he doesn't like to see me cry because T is crying all the time"
"I have one friend who seems to get it but the rest I can see their eyes glazing over whenever I mention it lol! Even those who don't get it still try their best though one friend even buys special snacks and stuff for lunch for when we go over."
"My friends are amazeballs! Wouldn't/couldn't cope without them"