Not coping. Don't know what to do.

[mumat39]

Ok, so my DD had her first reaction at 6.5 months to a baby rusk. She is allergic to so many foods, which I've asked for help on before on here.

We had her annual appointment about a week so ago, and lots of skin pricks confirmed that nothing has changed. She is still reacting, on the tests to everything. I always go in hopeful, but come out feeling so bloody down about it all.

I really am not coping with this. I am on AD's for depression and anxiety, partly related o this but, apart from feeling like a zombie, I don't really feel any more able to cope.

I need to get some practical help, and have asked on he about cookery lessons and some kind people offered to come to me to do that. But I really need to go somewhere else, like a class, and be shown the basics again. And I mean basics.

I also need to learn about 'adapting' recipes where you have t substitute 3 or more tog the ingredients. Does anyone know if the are any 'generic' courses like that anywhere in or around London?

Also, I asked the doctor at the appointment about nut warnings, as the warnings are on everything it seems. Even m&s ready salted crisps have a nt suitable for nut allergies warning. He basically said that I am in the 15% minority of mums who take the warnings seriously. I was when he said that. It made me feel even more ridiculous than I did before I asked. He went on to tell me that worldwide, no one had died from eating a food that had a nut warning. but that there would have been very serious reactions. I can't take that risk! So I am in the 15% that really struggle. I just want to cry!

I try and think of alternative foods to feed my dc, but between fear of reactions, an inability to find anything suitable that doesn't have a warning, and my mental state, I'm stuck. Well and truly stuck.

If anyone can help with any of it, that would be great. Just feeling incredibly fed up with how 'allergies' have affected our lives. And my little DD hates having the skin prick tests as there's never any difference.

And I am never certain how the hell to start to introduce a new food. I am just so scared of it and paralysed by the fear into doing nothing!

Likeaninja, thanks.

I should say, that day to day I do deal with things. I just sort of feel like I don't know how o cope with trying new foods, introducing DS to new things, actually cooking something edible and most importantly, how to prepare my DD for dealing with things herself. She does on the whole, say no o something if it's obvious like cake. So, it's a start I suppose,

I think after the last allergy appointment and her reacting to carrots which have always been a really good standby snack for her, about as convenience food as it gets for us, I just start thinking, ok, right lets try something new, like say tomato ketchup (celery is a bit odd for her too, I always forget something from the list), but then I just can't do it.

So I guess the don't know how to cope bit, was with from now and how can I make myself do what I have to do. I am pretty good at following recipes, but haven't found many where it's obvious what to substitute for the various foods. I used to enjoy cooking many moons ago, but as someone wise on here said, 'I now view food as poison'.

Thanks all for your input. I'm hope I'll get there. Likeaninja, I guess knowing that you have a rota of meals and foods and that your dc doesn't have that much variety is Really reassuring, so thanks for posting.

Hope you all have a lovely weekend. Xxx

I don't know if this would help, but as someone who has lived with a very restricted diet, If I were you I would seriously look into growing my own fruit/veg on an allotment or in your garden if it's big enough. Those fruit/veg will not be contaminated, and also they will be pesticide free, which might make a big difference. You can then use these to cook.

Order some gluten-free recipe books to help with the wheat thing (though you'll need to avoid gram flour and almond flour that is in some recipes). Corn flour and corn meal is amazing stuff. Corn bread is DELICIOUS if you find the right recipe, and cornflour will thicken sauces etc where you'd use wheat flour. I ate a delicious lemon polenta cake also the other day.

Other grain sources are millet, buckwheat (not a relative of wheat at all - google it - tastes nutty without being related to nuts either, makes good porridge), rice, quinoa (yummy, fluffs up when cooking and will go with anything). You can buy gluten-free oats which mean they're not contaminated with any wheat, or use millet flakes in recipes like flapjacks, and fill those with yummy dried fruit, honey etc. You can make home-made sweets like peppermint creams, fudge (mmmmm!), toffee, and honeycomb.

You might need to tend towards a more european/american type diet (e.g. porridge with millet/gf oats/buckwheat for breakfast with milk and fruit, then cornbread with salad, cheese, tuna/cold meat (non processed so you know where it's been, e.g. cold chicken/beef) for lunch, and any variety for dinner e.g. gf corn/rice pasta with tomato sauce (onions, mushrooms, garlic, passata, mixed herbs) and meat/cheese OR tuna pasta bake with a white sauce made with cornflour (lots of gf recipe s on internet) OR carbonara type sauce, perhaps with quinoa, OR a stew (use cornflour to thicken) etc. Possibilities are endless!

Bake your own cakes/sweets/flapjacks though. It's easy enough to avoid your list for proper meals, but harder on her for snacks. You can make your own crisps too if you have a deep fat fryer. It's fantastic fun!

An older version of the Good Housekeeping cookery book (my mum's was circa 1970 I think) will teach you all the skills you need, and was from an era where most people made their own sweets/cakes/sauces etc. Hunt one down! Then combine the knowledge (and meal plans - v cool!) from there, with the gluten-free cookery books and you're off!

Yellow.

To answer your questions:

Most people, 85% the doctor said, take heed of "may contain" but that is all.
[the op though may have to avoid? I dont know. The doctor said no though?]

No. The doctor says what I am doing is correct, that it is not worth taking risks, but that only 15% of parents actually follow the advice. He talked about a doctor friend of his who was completely relaxed about everything and didn't worry about being careful with her dc, as she knew she could rely on the Epipen. That just makes me

Trouble is that mumat39 now doesnt trust the consultant.
Perhaps you need a different consultant mumat39?
It will make you anxious if you dont feel you can trust the consultant.

It's not that I don't trust him. I think he's just a doctor in much the same way as many others who ties in his own way to reassure me and play things down, but just makes me feel that I'm OTT. I have been thinking about maybe being referred to another hospital, but the allergy nurse is just excellent and moving would mean we don't get access to her again.

I think the problem is probably that I know I am über careful and when he tells me about these chilled patients he has, part of me wishes I was like that, but deep down I think I would harm my dd.

Babybarrister, thanks for all those links.

am just passing through and haven't read all of the response so please forgive me.

I happened to be in Broadstairs today and, in the car, passed a shop called the 'intolerant wife' which made me look a bit closer. it is a cafe/shop for people with food intolerances. I am expect they would be able to point you in the right direction.

gotta dash now but take care and take comfort from all the lovely mn-ers who have lots of top advice.

Oh, and viewing Epipens as a life saver. I know they can be but I'm not convinced that they work 100% of the time. I see them as a final thing to try when all else fails, in terms of my efforts to ensure that dd is safe.

We have two at home and two at the school. You have two in case the first one doesn't work, or fails to administer. My worry is that the first one might not be enough and the second one might fail to administer.

Maybe that's OTT too, but when they explained the reasons for having two, that's how I have rationalised it and I just couldn't take the risk.

As you say my Dd will manage things as she sees fit when she's old enough too. But for now, whether its right or wrong, I have to do what I can to keep her safe.

Bronya, thanks for your post. That's reminded me that Dd is also 'odd' with oats for some reason. She used to eat them when she was younger, but started to react o them and the reaction was confirmed by skin prick test last years think.

I am so bloody forgetful of everything she is allergic to.

Your post has some really good suggestions. Can I ask, when you buy grains, like buckwheat, is it possible to buy them with no nut warnings? I haven't found anywhere that sells things like that without the may contain nuts or processed in a factory that handles nuts.

Thanks again.

Trixy, yes please to the links to the recipes. Thanks so much.

I'm sort of reading the thread backwards so sorry if I've missed replying to anyone,

Would it help to treat your DS as though he does have allergies? Rub a little of a new food on his hand, wait 10 min, then run on cheek, wait 10 mins & so on. If no reaction, let him have 1 bite, wait 24 hours. Then, if no reaction, let him have more.

I totally get the anxiety. I really, really do. At times it's all consuming. But it's just life for now & I'm hoping it'll get better. My DS has outgrown wheat & soya allergies, so there's that hope to cling to for the rest (all dairy, legumes, eggs, peanuts, tree nuts & sesame)!

Have just pulled out our current packets of Buckwheat and Quinoa. Neither have nut warnings on so should be safe for your DD. The Buckwheat is from Tesco, and the Quinoa is from Waitrose.

Looking online (still worth checking the actual packet but maybe worth a visit to see?), Waitrose say their gluten free pasta is safe for you (fusilli, penne, spaghetti). It's their Love Live Quinoa that we have.

*Love Life

Bro ya, thanks so much for checking those. That's brilliant!

I have tried cooking quinoa before but it was vile. Is there a trick ? Do you have any websites that you use hat you could recommend?

Likeaninjanow, that's how I keep thinking i'll try him on stuff. The only time I've tried him on something that I wouldn't have tried on DD was when we ended up getting waylayed in JL. We went to a cafe and I ordered chicken, new potatoes and carrots for lunch. All safe as far as I could tell. I was feeling 'brave' that day. He had a little but didn't eat much. That afternoon, we were on a play date for dd. DS had the worst accident, with poo everywhere (tmi). It was awful. He was in pants and that was the only accident he's ever had.

Maybe a home cooked meal would have been better, but like I used with DD, I tried, but it definitely affected his tummy. I suppose my instinct is that he will have some sort of reaction. And according to 'sod's law' it'll be something completely different to DD's.

Thanks for your help.

Bronya. Sorry. Auto correct is weird!

We use doves pasta, which is wheat and gluten free. I'll check out the waitrose stuff too. I've been trying to find spaghetti for ages! Thanks for the tip. Xxx

The Waitrose Quinoa is nice. I've tried to follow packet instructions, but also just shoved it in loads of water to cook and sieved, both methods yielding nice results. I had Quinoa in my youth and HATED it, nasty strong sharp taste, so perhaps it depends where you get it and what variety it was/where it was grown or something!

That's a shame he had some tummy trouble after you'd taken such a huge step. Maybe try introducing new things one at a time, at home. Then you can pinpoint any problem foods more easily, you'll know about oils used etc. it may have been a stomach upset & not the food. I have 2 children, and the other isn't allergic to anything.

Of course you know your dc better than anyone, but I'm just letting you know that it does happen - 1 DC allergic, and 1 not.

Good luck, and I hope it gets easier.

Thank you both again.

I'll def check out the waitrose quinoa. Do you just use it in place of rice?

Likeaninjanow, I think pure right about just trying single foods at a time.
DS used to eat chicken, but as gone off it recently. Probably because I can't cook it o save my life. It always comes out SO stringy. Yuk!

Xxx

Thanks Angelik. I'm off to google it now.

Epipens brill. Lifesavers.

yes epi pens are gr8 and its fantastic that we have them, but most important part of keeping safe is avoiding what you are allergic to, that includes products that state may contain. I don't wish to rely on having to use them. I rely on avoiding allergens, cross contamination, may contain etc.

As I said its like it saying 'may contain arsenic. You would change ur view if something said 'manufactured in a factory that also produces weed killer' wouldn't you? Lets put it on my tongue and see if it tastes like weed killer... hmm its tastes ok so will b ok to eat.

Obv your son's have grown up now and have their own comfort zone, but going by previous reactions I would not take any risks.

Ukey, that's exactly how I feel. You express it much more eloquently than I ever could. Xxx

Hey Mumat,

I haven't read your whole post but couldn't read and run. I have PMd you as it was an epic post to put onto the thread, but hope it helps!

I also get good advice from the Jane Clarke website, lots of her recipes are delicious and I got her books yummy and nourish from the library, simple recipes that can easily be adapted where required.

And yes agree with treating DS as if he has allergies... Not least cos it makes your life much much easier to cook same for all. I have adjusted family diet to cope with severe allergies of my eldest, now I am not constantly cooking I have vastly recovered some equilibrium .

mum at 39 I am glad we share similar views

my aim is to provide wee man with the skills he needs to keep himself safe, as I know the older he gets, the more independent he will want to be. He knows what foods are generally safe for him to have, but also knows to always check the label as things often change. Generally teens and young adults take more risks, but I hope that he will continue to be vigilant as he grows older. He will have to manage his allergies on his own one day so I have always got him involved in learning how to keep safe while enjoying every day activities and still being a 7 yr old boy.

The kitchen fairy, I have replied to your Pm. Thanks so much, again.

Ukey, thanks again. My dd knows what she can and can't eat and she can also read now which helps massively, in her starting to learn to take control. I also involve her in cooking things like biscuits and cakes and she also likes to help with things like measuring out rice, or squeezing Tom purée if I'm cooking and she's not too busy playing.
I hope bth our dc manage o take responsibility and stay safe as they get older and more independent.