Help with feeding my kids, please.

[mumat39]

Hello

My DD is nearly 4.5 years old and we were first aware of her allergies at 6.5 months when she had a severe allergic reaction to a baby rusk. She spent the night in hospital and needed an intramuscular adrenaline injection.

Since then I discovered many many other foods and after 18 months we were referred to a pediatric allergist (at my request) who did testing (skin Prick and blood tests) as a result of which we discovered even more bloody foods that she has allergies to. The full list of foods is:
wheat
eggs
all nuts
all legumes (incl. peanuts and soya) (I discovered chick peas, lentils, mung beans, kidney beans, peas. I avoid other legumes as other have come up positive on the tests and I'm just too scared to be honest.)
sesame
rapeseed oil

She has also been off dairy since about 8 months old as it aggravated her eczema and therefore her allergies. She also has hayfever and started wheezing last summer so I'm expecting to be told that she also has asthma as some point.

She still has about 3 bottles of Nutramigen 2 (I know that's too much) and this seems to help me 'pad out' her diet. I tried about 3 months ago to move her onto Kara coconut milk as we were advised to avoid rice milk, but this caused bad diarrohea in both my kids and they both also lost alot of weight. Our GP suggested going back onto Nutramigen and this seems to have got them back on track.

Anyway, for the last 4 years, I have lived in fear of a bad reaction and have played it really really safe with foods.

In September DD starts school full time so am now starting to think about what sort of things I can give her for packed lunch. But I also need ideas for what else to feed both my kids as DS has the same foods as DD as the stress of him having something she is allergic to is all too much for me. I also avoid any foods that know to be allergenic.

So I and their diet is stuck in a rut so if there is anyone else in MNLand that is in a similar situation and can suggest some options for both meals and packed lunches that would be so very much appreciated.

At the moment, they eat, Ener-g bread, pure dairy free spread, Rice krispies, beef, lamb, chicken, apples, pears, tomato puree, doves gluten free pasta, carrots, broccoli, grapes, rice, organix raisins. I make my own chicken stock. I don't know if she is also funny with allergic to celery, onion and leeks. I also make cakes and biscuits for them using Doves GF plain and self raising flour, Doves Xantham Gum and a GF Baking Powder. I have recently started giving them kinnerton milk chocolate buttons and lollies and ready salted crisps.

I wasn't sure if she reacted to ORGRAN Egg-replacer so contacted the company that makes this and was told that alot of legumes are used in the factory and that I should avoid this due to DD's legume allergy as this might be cross contaminated.

I was also told by the dietician at the hospital to avoid frozen or tinned foods/vegetables due to possible cross contamination issues. So no tinned or frozen sweetcorn or things like that

I make a basic mince with the meat, or burgers or meatballs. Fry the chicken. They always have their main meals with either rice or the GF pasta. They won't eat sauces with the pasta, so I just fry it in olive oil after it has been boiled.

For packed lunches I do the same foods that they eat at home and just heat them up if we're visiting family. Otherwise, we tend to go out around feeding times, which doesn't leave much time. So when DD is at school, I really don't know what I'll send in.

Anyway, sorry for the LONG and disjointed intro. I just really need help and the dietician at the hospital is lovely but I never seem to feel as confident as they seem to suggest I should be about trying new foods or ideas. As a result I feel like a pretty rubbish parent and I definitely need help. [silently screaming feeling helpless emoticon]

Thanks in advance.

Have you tried Dietary Special gluten & wheat free white ciabatta rolls? They don't contain milk, wheat or egg (they do contain soya though). They are the closest thing to 'real' bread rolls I've managed to find. Most of the wheat free breads contain egg white so I was so pleased to find these. You can get them in most supermarket freefrom sections. Great for packed lunches. I also buy the Organix spicy tomato crisps but these do have onion powder in so not sure if they would be ok for your DD. Innocent fruit tubes are also great for packed lunches (in the fridge by fruit juice normally). You might some other ideas on another thread on here called 'convenience foods' or something like that (sorry don't know how to link to another thread).

I just wanted to gently say that it's probably not such a good idea to restrict your DS's diet so much unnecessarily. Having a very restricted diet when you have severe allergies is a necessity but it is a real shame to restrict a child who doesn't have allergies. I totally understand your worries but you have to realise that when DD starts school there will be lots of children around her eating foods she's allergic to (or in the park, at softplay, in the street etc etc). You can't live in fear of a reaction all the time. Yes you need a plan in place in case a reaction does occur and measures to try to avoid a reaction but as I always say, life isn't freefrom and we (parents & children alike) need to learn how to manage the risks rather than avoid them as complete avoidance is frankly impossible. Scary I know but life is for living and a child who understands their own allergies and how to avoid the dangers is better prepared for life than one who has never come into contact with any 'danger' foods. Hope you don't think I'm being critical, I'm really not. I'm just trying to be realistic. Letting go is so difficult but my DS started school in September so I do know what it's like (he's anaphylactic to milk, wheat, eggs & nuts). Are you a member of the Anaphylaxis Campaign? I thoroughly recommend attending one of their parents workshops about managing your child's allergy and learning to 'let go', it really helped me.

Hello FreefromMum

Thanks for replying.

Unfortunately due to DD's soya allergy we've never tried DS breads. The Ener-g gluten free loaf is fine as toast but not very good otherwise and sandwich's made with it don't taste nice at all.

I don't think you're being critical. Like I said I am stuck in a rut and I know things have to change and it's something that I think about ALL the time but still haven't managed to move forward on.

DD is at nursery at the moment for half a day a week. This has been fine but she hasn't really been exposed to food there.

I worry as DD is very sensitive and seems to react very easily so part of me feels that I just want her to be as safe as she can be at home. The other part of me thinks we should start getting her used to other people eating around her. I tend to not eat in front of her unless it's the same food she's having.

DS was also put onto nutramigen from 3 months as he failed to thrive when I was breastfeeding. The health visitors and GP all felt this was necessary given how much weight he lost and how uncomfortable he was with wind. To be honest I am scared of trying him with a new food in case he reacts as he still has a sensitive system. I also don't know quite how to start trying him on new foods. Just the thought of having something like peanut butter in the house scares me, as does proper bread.

Today we ended up taking DS to a&e as instructed by our GP as he hasn't been well for about a week, and in the childrens A&E waiting room, DD really wanted to play with the toys that are there for the kids. But there were about 4 other kids, running around with things like sandwich's, cereal bars, biscuits and a few other things that DD would react to. I made her sit next to me the whole time. Even before having a child with allergies I never understood the fact that people let their children walk/run around with food. I've always thought what if they choke??

Anyway, I see 'danger' every where (and crumbs). Also, we went through a phase of DD reacting to just about every new thing I tried and although the piriton always kicked in and settled the reaction every episode chipped away at my confidence in feeding her that I actually now don't feel capable of trying anything new. I am in a constant battle with myself as to feeling like I should just get over it and deal with it but also being paralysed by fear. It's awful and was so bad about 6 months ago that my GP put me on anti depressants which have helped me loads but I still feel like a deer in headlights.

I also feel a bit sorry for DD as she is often 'excluded' from things that other kids can do so I also feel like I don;t want her to feel like that at home. But if I don't let her learn, she never will. I'm so confused!

Anyway, that's a very longwinded way of saying, I know you're right when you say life is for living.

Thanks again for your reply and sorry again for the LONG reply.

Sorry, I missed soya in the list of you DD's allergies - obviously read too quickly! That's a shame as when we thought DS also had soya allergy I found that made it so much harder to find things he could eat. I'm sure you can make your own bread in a bread maker without soya in and it's supposed to be very easy and taste much better than the bought stuff. There's probably a recipe on here somewhere.

I know what you mean about places where there are other children because they are invariably covered in food. My heart sinks when I see a child wandering round with an ice cream & I get gripped with fear but over time I've managed to control it. My DS comes out in hives almost every time we go to soft play because he's touch allergic too but he's definitely getting better in this respect and I'm wondering if it's because he's being exposed more since going to nursery then school (no idea if this is the case or just coincidence). He also reacts to the toys in the hospital waiting room which is unfortunate because every time he has an appt with the allergy specialist he's all itchy, red and spotty so looks far worse than he normally is! A spoonful of Piriton always calms things down but I do still worry that one day it won't and we'll have to use the epi-pens. Saying that, I've come to the conclusion that as long as we have the epi-pens to hand then I know he'll be fine because I know that they work and will save his life if necessary. I hope that I will never have to use them but I so want him to have a 'normal' life and don't want to stop him doing things that other 4 yr olds do. The one thing I don't let him do is go to a friend's house for tea or be picked up/looked after by anyone outside the family simply because they would need to be epi-pen trained and I haven't found anyone that I'd feel comfortable asking to do this or fully trust to do so yet. I'm hoping when he's older this will change.