So upset, my 1y.o has no safe food, NEW development grr

@little1 after your post on Sara's food thread I was wondering how things are going for you and Joseph?

Hi, It's up and down really but we are making some progress. We have added apple, banana, strawberry, broccoli and cauliflower, which is great but we have recently had some big vomiting reactions and he was up all last night screaming after i tried him with a couple of peas

Again on the positive side the general anaesthetic and scope went well. They did find when he was under anaesthetic that his tonsils are huge and we will need to do a sleep study to see if they are causing a problem, so yet more hospital appointments and procedures.

This last week I've been a bit down tbh, we applied for DLA as i can't go back to work and it was denied on the basis that if Joseph is just eating 2 safe foods he has no extra care needs, ridiculous really considering he vomits profusely several times a week, screams for hours when he is reacting and won't be put down. I don't know how they can think food is optional a child cannot live of just rice and beef ffs!

Rant over sorry, I am very grateful to the other fpies mums on the fb group who i can rant to, and the website is coming along really well. www.fpiesuk.org . I have been working with the two big fpies charities in america and have been contacted by the top uk fpies specialist about helping him with a database. Still haven't got a proper allergy consultant near us though. Might get cheeky and ask this chap if we can go down to London to see him

I appreciate you asking after us, really not had much time to check in here lately xxx

I'm lost for words that it is considered that he doesn't have additional care needs. He is so so lucky that you are capable of researching so much about his condition and are able to create the beginnings of a support network for him (and others!). It must be so hard everyday, I can't begin to imagine.

What a disgrace to be denied dla. Unfortunately I think it is the way this country is heading id definitely ask to see the specialist in london. Do you know which hospital hes at? I can only imagine how hard it is to have such a poorly child. Heart breaking xx

That's made me sad that you can get dla, when clearly he needs lots of extra care. They hand dla to people who don't need it and then don't give it to others who do! I know how scary life is having safe foods. I rarely try new food as I have severe allergies. My consultant has advised me to introduce one new food a week when I wean my daughter. Hope you get referred to the right people.

@little1

How are things going for you and Joseph? How's the website / support network getting on? Did you manage to get a decent specialist nearby?

Wow I really can't believe I've not been on here since June 2014! Life has been so crazy.

Thought I'd update this and say hello before adding a new post to ask some nappy advice.

Joseph is now 2.5 and a cheeky little monkey. He has 20 foods he can eat so far and around 30 he can't with a few more to try. I still haven't managed to get back to work but J has recently started preschool a couple of mornings and is really enjoying it. Fortunately we did manage to get DLA in the end after I put in a complaint about the assessor who suggested J just eat two safe foods. The money really does help as finding/ mking foods that don't have lots of added ingredients takes lots of time and money.

In terms of the fpiesuk.org charity, we have finally become a registered charity and are trying our best to educate doctors and parents across the UK.

Anyway just thought i'd update, not even sure how many of you are still on here x

Lovely to see you !

fantastic news! I often think about you xx