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

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laceybat
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Re: So upset, my 1y.o has no safe food

Postby laceybat » Fri Nov 15, 2013 6:33 am

Hugs it must be so hard

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confusinglady
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Re: So upset, my 1y.o has no safe food

Postby confusinglady » Fri Nov 15, 2013 7:26 am

Wow that does sound so difficult and upsetting for you all :hug:
As the others have said have they provided you with some kind of dietician to support you in finding out if there are other things he's not allergic to or some other ways of offering different textures?

Are you able to find other families in the same situation for some support? Contact a family have ways of helping you with this.

Good luck xx

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confusinglady
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Re: So upset, my 1y.o has no safe food

Postby confusinglady » Fri Nov 15, 2013 7:36 am

I ve just found this: http://fpiesfoundation.org/food-free-festivities/

Not sure if you be found this website? Xx

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little1
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Re: So upset, my 1y.o has no safe food

Postby little1 » Fri Nov 15, 2013 11:21 am

Thank you ladies, lots of lovely hugs and useful tips x

Our first consultant agreed (after i told him) that ds did have this condition but said he knew nothing about it and sent us to a dietitian who also knew nothing about it and told us just to feed foods that were 'convenient' :evil:

We then went private and got a lot more help but the consultant is a 3hr drive away from us and as i have been unable to go back to work as ds cannot go to nursery we don't have the money for further consults. We are currently waiting for an appointment with the gastroenterologist and allergy specialists at Alder Hey. I really think they will be able to help but the wait is 2 or 3 months so we are on our own at the moment.

Unfortunately there is no test to see which foods are safe as the allergy does not involve ige which you can test for. It is just trial and error. We have two possibly safe foods rice and beef but ds has been teething, had a cold and a tummy bug in the last few weeks so we have not been able to trial them properly (1 week each).

Unfortunately there are a lot of families out there going through the same thing. I actually started my own fb group a couple of months ago and we have 21 families on there already :)

I think the treasure baskets are a great idea, i also had forgotten about that food free festivities page so i will have a look. DS used to like bm lollies so formula ones are definitely worth a try.

Thanks again for all your support, its hard in real life as no one believes you when you say your baby is allergic to so many foods, even my family have not been as supportive as i had hoped but as they have now all seen his vomiting reactions i think they are starting to realise the extent of the problem. The consultants have both said he should outgrow most of it by age 3-5 so there is some light a at the end of the tunnel. It just seems far off some days.

Any more links for ideas for treasure baskets/ food free treats greatly appreciated, christmas is going to be tricky and i would like to make DS a few special none food treats to keep him occupied over the christmas period.

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confusinglady
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Re: So upset, my 1y.o has no safe food

Postby confusinglady » Fri Nov 15, 2013 1:24 pm

:hug: it must seem like a long way off for you and all very scary :hug:
Fingers crossed the safe foods are safe and you can find some more too xx

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Slebro
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Re: So upset, my 1y.o has no safe food

Postby Slebro » Fri Nov 15, 2013 3:29 pm

confusinglady wrote:I ve just found this: http://fpiesfoundation.org/food-free-festivities/

Not sure if you be found this website? Xx

ooooh I love the idea of a food free Christmas cake! You could all have a 'slice' at mealtimes or at snacks with the most fun/appropriate things going to your ds and little things for other people to do and be involved in. Maybe little stampers and Christmas stickers and placemats/tablecloth to decorate. It could be a lot of work to put together but would be amazing. I was just looking at some christmassy stickers etc online, I've used primary teaching services quite a few times and they have some little christmassy bits that could help. Also phoenix cards have tablecloths etcfor christmas - they might be a bit too old for your ds but there might be a way of adapting it?

I hope he's properly well enough soon that you get a chance to trial rice, it could make such a difference for him. And if beef is safe too, between the two there are so many food options/similarities.

That's good your family are starting to be more supportive. Let us know how he's doing >:D<

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little1
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Re: So upset, my 1y.o has no safe food

Postby little1 » Tue Nov 19, 2013 2:40 pm

I'm both furious and relieved today, i discovered over the weekend that Joseph's 'safe' formula Neocate, has had some contamination issues :evil: He has been unwell, runny nose, wheeze, cough, vomiting and gagging and choking when eating the last 3 weeks since we collected a new batch of milk. 2 weeks ago i even took his 2 safe foods away and put him just on formula in case they were causing a problem but he got worse.

Sunday i read on fb about possible problems with the batch we had. Nutricia who make the milk called yesterday and told me not to give the milk, to take it back to the pharmacy and they have couriered me some replacement. Joseph is a lot better today but refusing to drink the 'new' milk as he doesn't trust it, or maybe it tastes different (the bad batch smelled like monster munch).

It was the one reliable source of nutrition we had for Joe, they still won't say what the issue with it is but they are removing it from their suppliers so it can't be good. I have given joe his safe foods back but he is still gagging when he eats anything even puree, he was always fine before and would happily chomp down a beef burger :(

I already hated formula companies, now i hate them even more, doesn't help the fact that i have stupid mummy guilt about giving up :bf: , it was making him sick though, and i couldn't survive on just beef and rice.

I'm thinking about making an official complaint, does anyone know how to do this? I already filled in an adverse drug reaction yellow card thingy.

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

Postby Slebro » Tue Nov 19, 2013 2:54 pm

:( oh no that's awful. I've got no idea how you could complain I'm sorry. You must feel totally lost as well as upset and scared for your son. Big hugs, you are doing everything you can for him he's lucky to have you.

ps sorry foe rubbish msg I'm typing and moving so can't writee properly atm :(

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

Postby gilbertandmartha » Tue Nov 19, 2013 3:23 pm

No1. DO NOT FEEL GUILTY - you are a brilliant mum and doing everything in your power to help him, and imo not getting much help either.

NO2 - do complain, that is terrible that it could be contaminated in some way.

If there is any way I can help from this side of the pond let me know, there may be something I can send over to try or something like that :hug:

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