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FPIES

(23 Posts)
IsabellaB Tue 11-Jun-13 21:13:15

Hi! , we need FB support group for kids with FPIES and families in UK. I totally agree! I have joined the American support group and got loads of tips from them.
We have 9 safe foods so far ( fruit and veg) + Neocate spoon and Neocate formula ( my boy doesn't want to drink it but I mix it with the puréed veg and fruit)
We saw a very helpful dietetician but still haven't met a doctor who has heard of FPIES .
Sending warm thoughts to all mums and dads who deal with FPIES every day. It's not easy ....

magpie3 Mon 03-Jun-13 20:20:17

My 11 month old daughter has FPIES to milk, soy, dairy, chicken, eggs, banana and mango and sorbitol ( found in sugar free Calpol) had 6 severe reaction before being diagnosed. Very scary and almost unconscious from severe vomiting and upset tummy. Only thing that makes her better is rehydration.
We trial one food a week under consultant advice, mainly fruit and veg. One teaspoon full a day for 4 days. After 4 exposures its considered safe. ( she reacted to chicken on the 4th exposure and was ambulanced to hospital )
Have been trying to get my head round FPIES for months and am now just starting to make some progress.
Most of the support is in America, would love some UK families to talk to. Oh dd is still breast fed with me on an elimination diet, otherwise she reacts. She reacted to 7 specialised formulas including neocate :'( although this is rare.
don't be put off by docs who dont know about it, demand to see someone who does, we did and it really helped xxx

Annasmummy2012 Fri 31-May-13 07:41:12

Hi, I have a 17 month old who was diagnosed with classic FPIES and chronic FPIES at 8 months old. Her first reaction was a 4 months to milk but it took a lot to convince professionals our daughter was suffering from FPIES and we finally got our official diagnosis 4 months later. We have only 8 safe foods and are struggling with many fails over the last few months. Our dd was initally breast fed but our allergists/GI specialist decided she was still unwell at 9 months reacting to foods through my milk (even on a very limited diet). So at 9 months after a month in hospital my dd was put onto neocate formula through an NG tube as she would not drink it. Thankfully she does now tolerate it orally. Our consultant's have been helpful but I'm now considering pushing for an appt at GOSH, for those that have been what were your experiences? Did you get seen quickly? Were the doctors knowledgable with regards to FPIES? Really need some support as feel like we're just been left to plod along this road alone at the moment.

I have no idea how to start a FB group but feel like we need one for the FPIES kiddies in the UK!

IsabellaB Sat 20-Apr-13 09:12:16

Hello, thank you SO much for your message. I have heard about Dr Adam Fox ( from prof Nowak-Wegrzyn ). Will try to see him.
I have a feeling ds is allergic to soy too ( I have made some stir fry the other day with soy sauce and soy bean sprouts. I think it went through the breast milk as ds was really gassy that night and his stool was even greener and very loose. ) Sometimes he gets very congested, I think it's when I eat poultry but I'm not too sure. Straight after a feed his nose starts running and his eyes look watery.
My plan for this week is to try the Neocate ( I won't be trying the pepti junior). And will ask Gp for the Neocate spoon!
How is your ds doing now? I'm due to return to work soon and I'm petrified of leaving my boy with the child minder.
Are you based in London? ( if you don't mind me asking)

UnlurkyForSome Fri 19-Apr-13 19:58:06

Hi Isabella, that does sound like FPIES. DS (9 months) has FPIES to dairy (and suspected to soy) - the first time he had a full bottle of formula at about 4.5 months he projectile vomited for about 45 mins and then went grey, floppy and unresponsive. It was terrifying and I really sympathise with you going through the same thing. We called an ambulance and he recovered in hospital. Although our GP wasn't much help I managed to get a referral to Dr Adam Fox (www.adamfox.co.uk) who is based in London and he diagnosed FPIES. He's fantastic and I'd massively recommend him. Apparently as well as dairy and soy the most common allergen that triggers FPIES is rice, so that fits with your DS's response to baby rice. On the plus side Dr Fox reassured us that although the FPIES reaction is scary, it isn't dangerous so hopefully you will find that reassuring too! We were also referred to a dietitan to help us with dairy and soy free weaning and she was really helpful. DS is still bf with some Neocate and I've had to cut out dairy and soy from my diet too. Apparently Pepti formula isn't great as it contains the same amount of dairy as the breast milk of a mother who is eating dairy so Neocate is preferable. Since I cut out dairy and soy DS's eczema (which was terrible) has completely cleared, he has gone up a centile in weight, and is all round happier and more responsive. Introducing Neocate was hard as DS was a bottle refuser too but we managed in the end. The dietitian also recommended something called Neocate Spoon - wierd stuff like custard, DS loves it, and it is a help as a yoghurt/custard substitute. Sorry for long winded response (my first post on MN!) but hope that helps, pm me if you need any more help as I've learned a lot about dealing with an FPIES baby over the past few months!!

IsabellaB Fri 19-Apr-13 13:54:11

Hi Ophelia, just read your message. That sounds awful. I really hope the fifth time will be lucky for you! What are you going to start with? Apple worked for us. Sending you warm thoughts, you're doing such a good job!

IsabellaB Thu 18-Apr-13 21:21:16

Thank you for the advice (again!). The porridge had some milk in it but I have tried hipp organic before and Max didn't vomit. Don't get me wrong, his stool was mucusy and green and he didn't want to drink it but he didn't vomit. I will try small amount on spoon and see how it goes.
I was considering to try goat's formula milk, different protein , no kaizen and tastes better.
I have also asked for referral to allergist but that didn't go well. The doc told me to try the milk first before seeing another specialist. I got recommended dr George de Tuit by prof Nowak-Wegrzyn from USA who specialises in FPIES . He is based in London, no chance to see him through nhs but might go private. I'm sick of doctors telling me that my boy has got "some sort of allergy but he will be fine, just try something different" :-(.
I'm just collecting the information and reading more and more about FPIES ( I'm biologist myself and that actually helps to understand how complicated this allergy could be) it would be nice to have a little bit of medical support as so far I feel like I'm on my own.
Will have a look at CAN, thank you. Really appreciate your help

haffertee Thu 18-Apr-13 20:38:16

Are you on the Facebook group CAN - not only FPIES but really supportive.

haffertee Thu 18-Apr-13 20:29:15

Ophelia that sounds really difficult, thinking of you and hope you get some new foods soon!

haffertee Thu 18-Apr-13 20:28:09

Our specialist said she always goes straight for Neocate with FPIES - Pepti Junior is milk based, just modified so does have cows milk protein in. Neocate has never seen a cow and is an elementary formula which means it is broken down to amino acid level!
Did the baby porridge have milk products in it - or was it contaminated with them. If so you don't know if it was the oats or the milk or both that he reacted to. If it might have been milk then I would be wary of Pepti Junior until speaking to a specialist who knows about FPIES.

IsabellaB Thu 18-Apr-13 20:12:28

Have you tried pepti junior? We saw consultant paediatrician yesterday and he suggested this formula before trying Neocate. I will pick up the prescription tomorrow and we will see !

haffertee Thu 18-Apr-13 08:12:11

Hi we are in durham, and there are good allergists at the children's hospital in newcastle who come down to durham for clinics. most are fine on neonate, docs said would have to cold turkey her to get her to switch from breast but we managed it gradually initially spooning it in her mouth then getting it from a tippy cup. neonate advice - it tastes better, well less awful, cold. i put boiled water out in morning so its room temp when we want it. try and keep in covered container when drinking even we they are old as smell is even worse than taste, and it makes there poo runnier and a bit green - not a reaction unless they are unwell.

IsabellaB Thu 18-Apr-13 04:33:04

One more thing, I haven't found any online groups based in UK , only in America. Any recommendations ? Thanks again

IsabellaB Thu 18-Apr-13 04:08:38

Thank you so much for the advice! I dont feel so alone anymore. It could be very frustrating when doctors don't believe you. I will push for the referral. Will stick to fruit and veg for time being and might try the formula. He is ok on breast milk so will keep nursing ( actually having my night session now :-)
Really pleased your daughter is doing so well! Please keep me posted. Where about in uk are you?

haffertee Wed 17-Apr-13 23:29:17

Yeah that sounds like fpies, my daughter has it to milk
Gave her an ounce of formula on two occasions when very little with profuse vomiting. Hv suggested trying a different brand, tried a full bottle when five months old and vomited twenty times in an hour until she passed out, two ambulances came for her. Docs insisted stomach bug but didn't believe them. Went to see a locus who believed me and who rang round some friends of hers cause she didn't know who to refer to.
When specialist got her referral she rang us urgently to make sure she had no more milk.
My advice push a referral, some of the fpies online groups may know a good specialist near you.
Also don't give any of the offending foods again, even in traces. My personal opinion from being on groups and experience the slower you wean the better and never introduce a new food if ill or had a reaction. We weaned at seven months onto carrot, for three weeks! Then one new fruit or veg a week, eventually braving oats, wheat and meat. We did hire risk foods, chicken, fish, rice etc last of all. it was a pain but she has of reacted to anything else which I personally think is due to doin it so slowly. She can now have most foods except dairy and we recently had a soya trial in hospital which she passed! Milk trial next feb!

OpheliasWeepingWillow Wed 17-Apr-13 22:28:55

Joining as my dd has suspected fpies . She has reflux and is tube fed Neocate overnight. Right now the only food she can tolerate is Ready Brek with oat milk. Am about to try and reintroduce other foods. She is 14 months and this will be the 4th time I have tried to wean her!

IsabellaB Wed 17-Apr-13 22:26:46

And, where about are you in UK?

IsabellaB Wed 17-Apr-13 22:08:53

I'm sorry for the spelling, autocorrect is not helping!

IsabellaB Wed 17-Apr-13 21:58:24

Hi, I'm in Epsom ( Surrey ) just moved from London recently.
We have seen consultant paediatrician today in a hospital but he wasn't aware of FPIES himself. Although he admired that my boy has got some sort of allergy.
Max is 6 months and I have started weaning recently. 2 hours after giving him baby rice he started projectal vomiting, went very pale and cold. After that he had a diarrhoea for few days ( gp told us it was a stomach bug) . Next trial was baby porridge , 2 hours later dramatic vomiting , this time I had to call 999 as max went white, blue and floppy. Once again in a&e we were told it was a stomach bug. I started suspect its the food and tried again a little bit od baby rice. Same reaction.
After hours of googling I came across FPIES and I could believe how similar the symptoms are!
He is ok on apple, pear and potatoes so far. Still on a breast milk but I have to switch him to formula. Asked my Gp for Neocate but haven't tried yet.
How is your little girl doing ?? And how are you dealing with the allergy? As you know not many people have heard of it , I have been to 4 Gp and none of them were familiar with FPIES .

haffertee Wed 17-Apr-13 08:39:41

Hi, my daughter has fpies now 17 months, where a bouts are you and what symptoms are you suspicious of and to what. Be aware that almost no one has heard of it so gp is unlikely to have heard of it, ask for referral to an allergy specialist, but even then may be tricky.

IsabellaB Fri 12-Apr-13 21:24:27

That would be great, thank you

Indith Fri 12-Apr-13 19:41:15

My childminder's daughter has it. I shall send her a link to this thread, don't think she is on here but she has been through all the restrictions, super slow and careful weaning etc.

IsabellaB Fri 12-Apr-13 18:30:01

FPIES . Has anybody had a baby with FPIES? I am suspecting my son has got it. I'm desperately looking for other mums who came across this allergy

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