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Do you ever feel defeated by your DC's multiple allergies? (warning: moany post)(26 Posts)
I know I should be grateful that my 13 mo DS is otherwise healthy, but the time, energy and worry spent on dealing with his allergies to milk, eggs, wheat (and now sesame) is sometimes overwhelming. Doesn't help that I'm working almost full time, I have a horrible little kitchen in a rented house and no freezer space (getting a new little freezer soon, hopefully). DS has plenty of energy and curiosity but he looks so pale and his eyes have such dark circles that I'm constantly worried I'm not feeding him properly. Just want to say "aaaarrgh, can't deal with it!"
Anyone have any coping strategies?
allergic kids always look pale, and the allerrgic shiners are a sign of an allergic person.
other than that, i agree with every word you said, its all very overwhelming.
well come on down and have a moan here! just to make you laugh though I did read something in a medical journal about a lady being anaphylactic to semen .... . now that must beat all of our mere food allergies hands down
Garliclover I feel exactly the same. My dd is allergic to milk and eggs and we have to have nuts. I think I could core better if I knew that my efforts could keep her safe. But a recent severe reaction has made me super anxious. I'm just grateful that my dd likes most other foods so her diet isn't too limited.
Don't really have any coping strategies to share, but hopefully once you get a freezer you'll feel a little better. I find it so much easier if the freezer is stocked with meals for my dd so that if of are go a hurry
Ah sorry posted by mistake!
What I was saying freezer necks are great in a hurry!
Yes, frequently! We had a lovely day out today, but I couldn't relax & enjoy it until we'd safely found something for ds2 to eat for lunch. I'm anxious about food all the time.
I find it exhausting thinking of ways to vary his diet. I worry he eats too much meat, but he has no other source of protein.
Noone in RL understands how difficult it is, and they sometimes simplify situations that put him in danger. Trying to make things normal is hard, as is trying not to scare a 3 year old while letting him k ow it's important to be careful.
You've come to the right place with this board though...
Much sympathy garlicclover. Its really rubbish at times. You are definitely not alone in feeling overwhelmed and fed up!
The 'milk in fruit juice' (wtf) thread has some good old moaning (on my part in particular) which you are most welcome to join in on.
Do keep posting here. Unless you are friends in the same situation in rl it's pretty much the only place where people 'get' what having food allergies really means.
yes - keep posting!!! we understand. I get so much support on here ....
I want to meet you all in RL
I really do empathise with you and remember how overwhelmed I felt with dd1. He was allergic to gluten, eggs, kiwi, nuts and celery. I distinctly remember standing in Sainsbury's the day he was diagnosed with egg and gluten and literally crying as I picked each "free from" pack up to discover I could hardly find any which were both egg and gluten free. That was the low point! Meal planning and your freezer will help enormously and the occasional cathartic rant on here will help too!! It might also help to know - my ds1 is now 8 and has outgrown the egg allergy, celery is almost gone and they think the kiwi will disappear too. We're stuck with the nuts probably, but we can handle that.
As for coping strategies - read up on it all, relax if you can and let it just become your "normal". Whenever I become low about it I give myself a virtual slap and remind myself how bad it could have been - although I nearly gave a friend a real slap when she commented on how strange it was that I breastfed ds1 for 6 months and he has all of these allergies but her dd2 had a bottle from day 1 and had nothing Grrrrrrrrr. My reply was "well, I just console myself with the fact the allergies could have been worse had I not done that "!!!
Smoggie...how do you find out that your dc no longer has the allergy...tests then challenges?
Yes - skin prick testing then challenges, so with the eggs we tried them first in baked products and a year or so later scrambled. The gluten just seemed to gradually reduce in it's reaction to skin prick testing, so again, we tried small amounts. The kiwi was a strange one as he was weaned with kiwi and no probs at all, it just appeared out of nowhere when he was 4/5 yrs. V strange. That's why they think it could disappear as quickly as it came. Places like MN are great to come and have a moan as there are always people on here who know EXACTLY how you feel.
garlic I completely understand, I often find it all very overwhelming and despite knowing DD could have something more serious, it still feels so unfair. My DD is 17 mo and allergic to nuts, eggs, dairy and soya. And I find it really difficult to find safe easy foods. My DD is also not keen on meat so protein is a real issue. Also all social situations seem to involve food somehow which constantly terrifies me, especially as DD is still too young to understand what's not safe to eat, she still puts everything she finds into her mouth.
Coping strategies; I think time helps a bit. Also batch cooking and making lots snacks as that's one of the areas I really struggle with. hopefully your new freezer will help.
Allergy Essex' website sells a lot of useful things including egg substitute. I also found an egg and dairy free mayonnaise by a brand called 'life' in waitrose.
We ended up buying a bread maker as it seemed impossible to find soya and nut free bread/rolls etc. With your DS' wheat allergy it may be worth considering, although they are not cheap.
MN is great for support and 'meeting' other people who actually know how you feel. I would also highly recommend anaphylaxis uk. They are just fab. If you can get go one of their support groups they are great in allowing you to offload and meet people who don't think you're a neurotic mother. It's the first time since DD was diagnosed that I felt normal.
I love BB's idea of meeting everyone on here for real though. But I assume the practicalities of distance will mean MN is the easier option.
Good luck. And have a good moan on here whenever you want, you're in good company.
My multiple allergic DD is now 5yo, and things are fine now, and have been for a long while, she's still allergic to everything though . I totally know what you mean by feeling overwhelmed, I hated weaning her, the experience was so fraught, and it was not until she was perhaps 16 months old or so that we began to have a good understanding of what she could and couldn't eat (e.g. we'd been withholding fish, as I'm allergic to fish, and she seemed to be allergic to everything, but it turns out, happily, she's not allergic to fish). She didn't gain any weight between the ages of 8 months and approx 20 months, she's still shorter than I think she should be, the whole thing was so draining. She breast fed until she was 3.5 years old as there was pretty much no alternative, it was the only thing sustaining her at times, but I felt so worn out and a little resentful of it. The whole extended breastfeeding debate just makes me feel weary, as I feel I had no choice.
Things did improve after a while though as we just got into the swing of preparing her food in a different way, and we got used to our new existence, it really does have a huge effect on the whole family. We still all eat differently, e.g we rarely have butter in the house, just pure spread, never any nuts, etc. She's allergic to milk, eggs, nuts, at your DS's age she was also allergic to soya, beans lentils and all legumes, mustard, squash and pumpkin, she outgrew these allergies though.
So we're in a much, much better place now than we were in her toddler days, I think the place you're at now was the worst for us, so hopefully the only way is up!
garliclover I totally agree, it is overwhelming and I often feel 'defeated' by DS2's allergies (same as yours but without sesame, as far as I know!). Especially at kids parties when the other kids are tucking into whatever they fancy while DS has to stick to his packed lunch. To be fair, he never moans about this but he's only 4 and I fear this might change as gets older. He's already asking why he can't go to friends' houses to play without mummy and doesn't understand when I try to explain He starts school in September and I do worry about how his allergies will affect him pscychologically and socially. So far though he's a very happy little boy and pretty healthy considering! In fact, he eats more fruit and veg than most kids his age and thankfully he loves meat so no probs there. It's just so draining having to be on high alert all the time. My DD1 has also recently been diagnosed as coeliac so that's been another food thing to try and get my head around. Feel like I spend half my life in the free-from aisle at the supermarket reading ingredients lists and the other half ordering and collecting prescriptions from the chemist!
Thanks so much for all your replies. Reading your stories and words of wisdom is a great boon -- what a resourceful, strong and downright heroic bunch of people!
One other thing cheered me up today, and that was the list of links on the piginthekitchen website for allergy-friendly, gluten-free blogs. Just brilliant! Also found some old unused Lansinoh breastmilk storage bags which I've discovered are great for storing frozen food: no faffing about washing pots or icecubes... a godsend.
I am completely stressed out with ds2 and dd's allergies/intolerances/eczema etc. It really is so overwhelming at times. Ds2 is allergic to dairy, wheat, soya, sesame, tomato, nuts, lentils, egg white, possibly gluten and coconut. He's just over 2yo and has been having soya milk/products etc, but now withdrawing soya as his eczema is V bad still. So I'm left with what to feed him??!! Fortunately I have dd who's 6mo and bf so I've come to the decision that the only thing I can do is to remove these products from my diet and express breastmilk for him.
So that's what I'm planning on starting over the next couple of weeks....argh!
Eating out is a nightmare, but so is eating in a lot when I'm unorganised! And i'm dreading the birthady party invites when they start
Garlic I've just looked at pigsinthekitchen brilliant!!! We can eat cake!! I can't wait to get baking...and the bread rolls!
mamasunshine, what a nightmare. Now that's what I call a devoted mum, using your breast pump for DS2. If you're into baking, have you heard of "Allergy-free desserts" by Elizabeth Gordon. It's American, so some of the ingredients and measurements are a bit tricky, but it looks good to me. Haven't tried any of the recipes because have always been a rubbish baker, but one day soon....
mamasunshine - have you tried Oatly or rice milk - both calcium enriched? Oatly "cream" particularly good !
problems with soya v frequent for the CMP allergics sadly ,...
mamasunshine I agree eating in can be stressful too when I'm not organised, which seems to happen too often. We have already started getting birthday party invites and I'm terrified too. But pig in the kitchen is a great website so I need to practice the party foods to take along for my DD, and just hope that the actual party food doesn't get messy and contaminate toys etc. Not quite sure how to handle it, first party in October and I am panicking as if it's tomorrow. Anyway I hope you are feeling less stressed now, and find the various websites useful.
garlic - will have a look at that book, thanks
babybarrister - I didn't think about Oatly! Bought some calcium enriched last night, do you think that'll be ok to use now, rather than expressing myself? He has multi vits&mins too, so I'm thinking it would be fine? <<<hopeful emoticon>>>! Have used rice milk every now and again, but worry about the niacin (?) levels?
choca good luck for the first party!
I now just need to find the time to do some baking. Ds actually goes to nursery 2 days a week whilst I work, however I'm seriously thinking of giving up work and taking him out as he seems to have a flare up every Weds evening, (nursery days mon and Weds) just get it under control(ish) and he's back at nursery They have been as helpful as they can, but now he's older they can't put him in a high chair to eat and remove all traces of food from the other lo's. Also the floors are carpeted etc etc so I'm thinking if I have him at home all the time, at least until next Sept when we can try again and re-assess then? Any thought? What does everyone else do?
Also 6mo dd has eczema so we'll be discovering any allergies she may have over the coming months and I just don't know if I have the energy for work and tackling nursery on top of it all.
Ds is 10 now and allergic to Eggs nuts fish sesame chocolate ( we think) and blue food colouring. He was also allergic to soya (outgrown) and at the time was also put on a dairy and gluten free diet.
Eating out is hard as we send the waiter/waitress back to the kitchen to check everything out and it limits where we can eat - especially if we have my dad with us as he is Gluten free.
At home I just have to cook. We have a breadmaker - from when he was also milk intolerant and allergic to soya. I make bread and pizza dough in this.
we eat a lot of variations on meat and veg, or home made chinese to exclude the sesame as they use the oil a lot.
I have just leant to make quick food as much as possible.
A current favourite is breadcrumbed chicken - if you make it you can use gluten free bread - we use yoghurt to get the breadcrumbs to stick (guess you can use soya yoghurt).
I have a book called baking without eggs I bought on Amazon which I have adapted recipies from.
But yes it does get me down sometimes - so I sympathise. BUT at least it is something we CAN deal with and not a fatal illness. - You have to keep reminding yourself this and put it into perspective.
Well of course it CAN sadly be fatal alison222 but I know what you meant...
MMM yes - perhaps I could have worded that better. Still you know what I mean.
And as someone who carries epi-pens around for DS I should know better....
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