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Not coping. Don't know what to do.

(125 Posts)
mumat39 Thu 22-Aug-13 20:31:14

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 shock 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. shock shock 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. sad

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!

yellowballoons Thu 22-Aug-13 20:38:15

www.anaphylaxis.org.uk/

Have you been in contact with this society at all?

How old is your DD now?

Does she have epipens?

Has she yet had an anyphalactic shock?

ukey Thu 22-Aug-13 21:07:10

hi, hope u and ur wee one are ok, what is she allergic to.

I think far more than 15% take may contains seriously, most ppl I know with allergies avoid may contain.

babybarrister Thu 22-Aug-13 21:49:03

I second the suggestion of the Anaphylaxis Campaign - they have lots and lots of workshops for parents - please have a look

mumat39 Thu 22-Aug-13 22:24:13

Hello. Thanks for replying.

Just read some of my thread back. I sound a bit desperate. Sorry.

At 6/6.5 months she had an anaphylactic reaction to the wheat in a baby rusk. That was just after we started weaning and looking back it feels like pretty much everything I tried to give her she reacted to. I'm Indian and grew up eating lots of foods that my dd seems to be allergic to.

She will be 6 next month, so over the past 5.5 years she's had to deal with it. She has Jext pens and has to have daily antihistamines through the summer. These affect her so that she is really tired most days, and last term the teachers even said she seemed very tired and not herself. I took her off the antihistamines and she really perked up. Fortunately, she is a really bright little girl. She is very quick to pick things up and also has an amazing memory. She is often angry with me and once said it was because it was my fault she has allergies. I don't blame her as I do feel responsible. Sometimes she just seems really sad, and I don't know how to help her.

She is allergic to:
Wheat
Eggs
Peanuts
Legumes- chick peas, lentils, beans, mung beans, kidney beans, soya etc, so we avoid them all.
All nuts
Sesame - we were told to avoid sweets
Rapeseed oil

Recently, she has started reacting to raw carrot. OAS I think.

Tree pollen
Cats
Dogs.

My Dd has never been keen on potato, in any form but has recently started to eat oven chips and reluctantly had jacket potatoes at school.

I also avoid things like strawberries, kiwis and other well known allergenic foods. It also costs me a fortune in buying 'free from' foods. A small loaf of bread that I have to order as it's not stocked anywhere costs me £3.09 per loaf of about 12 slices. We don't have 'normal' bread in the house so I eat that same bread although not all the time as it's too expensive.

I am a follower of 'rules' and after her first reaction I was told that the next one would be worse. When she was tested at about 8 months old, she tested positive to everything else she was tested for. That was at our local hospital, where she didn't test positive to wheat. So they did a challenge and she had her next awful reaction. I really wasn't happy and learned that we could be asked to be referred to a paediatric dietician and have been seeing them for the last 3 years.

My Dd is often tired and also has some behavioural issues and I think I am compounding these things by being completely rubbish at providing adequately in terms of food. We have been seen by dietician a who gave me lists of what to avoid, but I was and still am completely unaware of how to move forward.

I have spoken to the anaphylaxis campaign and have been invited to a couple of support groups, which have been great, but I don't feel as though I have had any real practical help.

I've had one session of counselling which didn't help. I'm waiting for some CBT now, but I really need someone, to hold my hand and walk me through how to feed my children as well as myself.

My DS hasn't been diagnosed with allergies, but I can't quite bring myself to feed him anything that my DD can't eat. I feel so mean doing that to him, but I literally don't have any confidence in starting.

I really wonder sometimes if I am beyond help. If it was just for me it wouldn't bother me, but I am responsible for my children and they deserve better from me.

I can't sleep at night as it is constantly a worry for me, I have looked at alot of cookery books and have tried things, but they are in the main a disaster. I have tried to deal with this by myself, but need to get some help now.

Sorry this is such a pity party but I am so so disparate for some help on ow to move forward and be a better mother and provider. A the moment I feel like I am failing.

ukey Thu 22-Aug-13 22:34:08

come join us in FB if u have an account..

https://www.facebook.com/groups/314395208597263/

https://www.facebook.com/groups/287804004568701/

ukey Thu 22-Aug-13 22:35:05
yellowballoons Thu 22-Aug-13 22:43:15

You need first class prefessional help with this.

My children are allergic to nuts and penicillin so that is all I know about.
As regards the "this product may contain nuts - my son is severely allergic and had 3 ananyphalactic shocks[from products that he did not know contained nuts, such as an ice cream in a cone]. But he still has those products that say "this product may contain nuts", just does a tongue tingle test first. I expect you know about that.

As regards your son, he should be having normal foods. There is no reason why he cant is there?

I have 2 chilrden with allergies. And 2 without btw.
Nuts are in the back of a cupboard and are only out when the 2 with allergies are elsewhere.

It is not remotely your fault that you find all this difficult. So would anyone.
Have you found no one who you can contact when you are down about this, even at support groups?

What you ultimately need is practical advice about the cooking.
I hope you find it.
Is the dietician able to help you more?

mumat39 Thu 22-Aug-13 22:45:24

I don't have a Facebook account. But thanks for the invite. I need to look into just how private I can be on facebook as I feel a bit weird about it, iykwim. [ blush]

shelsco Thu 22-Aug-13 22:53:54

So many allergies must be really hard but you sound like you are blaming yourself and it really isn't your fault. Allergies seem to happen to some people regardless of whether or not they have avoided the allergens or not or breastfed or not. It isn't anyone's fault. And I wouldn't believe the doctor's comments about only 15% of people avoiding nut traces. I keep hearing of more and more people who do avoid them and also of people who have reacted to traces. You do sound overwhelmed by it all but there are other people out there dealing with similar issues who might be able to help. The groups on facebook are really supportive and might help give you practical advice.

Fraxinus Thu 22-Aug-13 23:04:10

Not guaranteed nut free is more of a problem with processed foods, so it is really difficult that she is also allergic to legumes!

Have you tried making a list of what she can have, instead of what she can't have? If she's not fond of potatoes, have you tried other carbs like barley, quinoa, millet?

My dd had severe eczema, and the eczema nurses were great.. They talked me through what my daily routine was going to be in order to comply with the prescribed medication. I do hope you find someone to do the same for you.

trixymalixy Thu 22-Aug-13 23:13:25

sad mumat39.

Whereabouts are you? If you're close to me I'd be happy to come and help you out with some cooking tips. I'm in Glasgow.

We tend to ignore may contain warnings EXCEPT on chocolate. DS only has free from chocolate as he has reacted to any chocolate with a may contain warning on it.

It is hard to introduce new foods. I find that DS is very reluctant to try anything new.

mumat39 Thu 22-Aug-13 23:23:26

Thank you all.

My DS didn't thrive when I was feeding him, and due to DD's history was put onto the same hypoallergenic formula that DD was.

I should try him on other foods but seriously can't bring myself to doing it. I know the allergies might not be my fault, but the way I'm not dealing with them is, iykwim.

I will talk to the anaphylaxis campaign.

Does anyone know of any cookery courses that might be useful?

Thanks again, for listening, and for your advice. [Thanks] I do need practical advice but no idea where to get it from. The hospital dietician is lovely but just tells me to do this or that. I often don't know where to start and then if I do try, Invariably when I try it's a disaster. My DD's allergy nurse is great too. She's the one who suggested counselling

Xxx

trixymalixy Thu 22-Aug-13 23:28:59

What about this?

trixymalixy Thu 22-Aug-13 23:34:09

Here's another

Have you tried blogs like pig in the kitchen?

If you tell us what kind if food you would like to cook maybe we can suggest something?

mumat39 Thu 22-Aug-13 23:37:40

Trixy, thanks for your kind offer. I'm just outside London.

I really think it would do me good to do some sort of class out of the house. I need a fresh perspective on things so being away from home would be really good for me.

I hope all's well with you and your family. thanks

trixymalixy Thu 22-Aug-13 23:45:03

We're all good thanks, DD passed a baked egg challenge and DS passed chickpea and lentil challenges and we're hopeful about a sesame challenge soon. Still the egg, milk and nuts remain, don't think he'll ever outgrow those sad

I'm really sad you're struggling and wish I could help sad.

mumat39 Thu 22-Aug-13 23:48:46

I've seen the first link before but discounted it as i assumed the course was geared to dairy and gluten free. I'll call them tomorrow and see what they say.

Thanks for the other link too. smile

MollyBerry Thu 22-Aug-13 23:49:54

Regarding the cost is it possible to get a free from foods prescription from your doctor. As she's a child it means you won't have to pay for them rather than paying loads for a loaf of bread

mumat39 Thu 22-Aug-13 23:51:03

Oh, posted too soon.

I love the pig in the kitchen blog. I haven't looked at it for ages so will go and check it out soon.

I'll have a think about foods too. I keep thinking tortillas would be a nice thing to try, but whenever I try them they are always super chewy and go a bit cardboardy really quickly.

Xxx

mumat39 Fri 23-Aug-13 00:13:14

Molly, hello. I asked our GP about getting some stuff on prescription and he wrote to my DD's allergy doctor. He replied to say that as DD isn't celiac that he couldn't justify prescribing food. Very frustrating really.

trixy, Wow! Congrats on the challenges! That's amazing! truly! Dd wasn't ever allergic to milk but it aggravated her eczema. How old are your dc? I love hearing about successful challenges as t reminds me there is hope. Fingers crossed for sesame and that you can soon tick the others off the list. That news has really cheered me up. thanks

ukey Fri 23-Aug-13 01:01:56

Avoiding anything that says may contain nuts, made in a factory that also handles nuts, not suitable for nut allergy sufferers is the advice we stick to! It is NOT worth the risk in my opinion, something with a may contain warning may b ok, your child may have had it before without issue several times, but then may react the next time. Its like a game of Russian Roulette and not a game I plan on playing.

So please don't feel that you are in the minority for avoiding may contain, everyone is different, and each situation is unique so you have to do what you feel you need to do to keep your child safe.

mumat39 Fri 23-Aug-13 09:52:39

Thanks ukey. Russian roulette is exactly how I feel about it.

My DD's doctor is very good, but he's so blasé about things and talks alot but doesn't actually say anything, if that makes sense. For example, I mentioned that DD's skin has been very itchy, and he just sort of ignores that fact.

Also, I have this constant niggle where I wonder if she is actually allergic to some of the stuff they have tested her for. She's never had things like egg, but reacts badly to it. I just don't understand it all really. I sort of feel we are processed which I am grateful or, but at the same time, the practical advice hasn't really been there, or maybe it has but I just haven't processed it.

Anyway, I'm rambling again. Thanks again.
Xxx

yellowballoons Fri 23-Aug-13 13:31:46

Are you a bit of a perfectionist?
As you seem ot keep kicking yourself iyswim.
And also, you go beyond what you really need to do. So you are partly your own enemy.
And I dont wish to be harsh, but from your childrens pov, they dont need you to be perfect, and would not want you to try and do more than you should.
That does nor help them does it?

yellowballoons Fri 23-Aug-13 13:38:12

So, you restricting your sons diet. not good is it.

And you thinking that tortillas have to be perfect and lovely, no.
Try them, and eat them. All good.

I was going to say about asking the hospital dietician for more help. But you would expect the results to be perfect, and they wont be, so in your mind there is no point in asking.

As I have said, I have chilrden with allergies. [and btw, one of mine is now not allergic to some nuts]. But I never expected everything aout it all to go swimmingly. Life is not like that, and I certainly didnt want to make life more difficult for them.

Can you leave go of your perfection issues a bit, for their sake?

Yes, to being vigilant. But if it goes wrong, [I presume you have a protocol that your nearest and dearest and school and nursey have etc], then that one gets whipped out, and off to hospital they go. As did mine.
So long as the protocol is adhered too, they should be ok.

yellowballoons Fri 23-Aug-13 13:39:44

Do you have a partner to help take some of the emotional strain?

mumat39 Fri 23-Aug-13 13:51:25

Thanks yellowballons

I'm far from being a perfectionist. I am just very confused about everything. It sometimes feels like I've had the rug pulled from under me and everytime I try and stand up, there's ice and I fall straight back down again. If that makes sense.

Whenever I make stuff, like the tortillas, I always offer them to my dc to try, and more often than not, they can't eat it. I'm a bit like Wendy Craig in butterflies. But it's not funny.

I know not feeding my DS is wrong. That's why I'm asking for help here as I feel completely ridiculous that at nearly 45 I haven't to a clue. I really have struggled for the last few years and it really has affected my mental state. I almost just want someone to hand hold me through this iykwim.

My Dd is doing well despite my not feeding her very well. She's on the 75th centime for heigh and 50th for weight, so she is growing. It's just I need to give them more variety and that's where I fall down.

I hope I don't sound defensive. I completely agree with what your saying, apart from the being a perfectionist. I need o get a grip but I need some help with it as I've reached a point now where the stress of not providing is getting to me. It's really hard to describe but I literally feel stuck.

I'm going to try and speak to DD's allergy nurse again about getting some practical help.

Thanks for your help. Xxx

Meglet Fri 23-Aug-13 13:53:13

It's hard isn't it. 6.7yo DS started with eczema as a baby and over the years has added some fruit + nut allergies and developed hayfever in the last year. I'm a nervous wreck very edgy when he's out with family in case they forget and give him something they shouldn't. He can't go on playdates on his own as I can't trust other parents to monitor him. We carry epi-pens but luckily have never needed them.

You said your DD is tired due to the antihistamines? Does she have piriton, which I think makes them sleepy, or cetirizine (sp?) that doesn't affect them as much?

mumat39 Fri 23-Aug-13 14:04:33

Thanks Meglet. Sorry to hear that your DS also has this.

DD has piriton for emergencies, plus Jext pens, but for hayfever she was having NeoClarityn, which is supposed to be a non drowsy one. When she has it for long periods, like during hayfever season, I think the non drowsy bit must affect her sleep so she's up until late, just lying in bed, pondering stuff or looking at books, and then she's tired in the morning, I mean has to be dragged out of bed. She also was having lots of accidents at night with bed wetting and also during the day. Piriton, also makes her very tired. She was given Loratidine recently, so we'll see how she goes with that.

Yellow, hi again. I just saw our question about my partner. He is at work and works long hours. I am a sahm so always deal with the food side of things. He is supportive but isn't that much help really.

mumat39 Fri 23-Aug-13 14:17:26

Sorry, your question. For some reason autocorrect always wants to change your to our.

BalloonSlayer Fri 23-Aug-13 14:22:59

The advice we were given by the paediatrician at the allergy clinic with DS1 was: "Avoid anything with milk, eggs and nuts [his allergens] in it as an ingredient. If a product has no allergens in the ingredients but has a 'May contain traces of...' or 'Not suitable for..." warning, go ahead and try it. If he has a reaction, don't have that product again. But most products labelled like that will probably be OK and if you take notice of all this Defensive Labelling then there will end up being nothing he can eat."

We have followed that advice and it has been good for us. However I can understand how you would feel unable to do the same.

He has reacted to traces of milk/egg in food but oddly enough the products have never had a "may contain" disclaimer on them.

(I must also add a disclaimer of my own - DS1 has never eaten nuts in his life and I only know about the allergies because of the skin prick tests. Nuts are not his most serious allergies.)

Re your DS - I was told I had to keep my younger two children milk, egg and nut free until at least a year old, to stop them developing the same allergies as DS1. They are both fine, but they would not touch milk or egg when I tried to introduce them to their diets. In DD's case it was particularly bad as she and DS1 are close in age and I couldn't risk giving her, say, ice cream, in case she threw it at DS1 or he accidentally picked it up. Later she refused to try it! I think she ate her first ice cream at the age of about 6, after a lot of persuasion !

I so understand your "Wendy Craig" comment. It's not easy making things without all the usual ingredients, and so deflating when you finally produce something half decent, and having felt ecstatic that you have finally managed to make something your DC can eat, discover that the bugger doesn't like it.

mumat39 Fri 23-Aug-13 14:38:11

Balloon grin. I know that feeling all too well.

We were actually told to avoid anything that had the warnings. It was explained to us as they might be ok 99 times but the next time a contaminated version could cause a problem. We were warned a particularly about chocolates, baked products and another one I can't remember.

A the recent skin prick test, there was a doctor from Spain as well as our usual one, and she was horrified by the size of most of DD's test results. The doctor told her not to say she'd never seen anyone react like that. She had an anaphylactic reaction to wheat, and that weal measured 8mm but peanuts, other nuts, and egg, were huge when they were measured. I think peanut was something like 25 mm and egg was about the same. The first time she was tested at this hospital for peanuts, the allergy nurse who has about 700 children on her casebook, said DD's was the largest she had seen. It was at that point she was prescribed Epipens, although when we renewed we were given Jext pens.

Yellowballoons way of dealing with things is exactly what the doctor was saying that a few of the mums he speaks to have a very relaxed attitude to allergens and are safe in the knowledge that the Epipens are on hand. I wish I could be more like that but I just can't. My DD's reaction when she was small was so awful and came on so quickly that I do everything I can to never take risks.

Also, I get a bit worried that when trying to help dd deal with things herself, and now that she can read, it's more confusing for her to be told, that's ok even though there's a nut warning, but oh no you can't have that. If it makes sense 8'm trying to keep things as simple as possible for her as the list of things is so long.

Xx

mumat39 Fri 23-Aug-13 14:44:51

That should say. She had an anaphylactic reaction when she was younger, to wheat.

Also, when she was you get I was actually so looking forward o cooking for her and weaning. It was really hard to deal with as some foods she reacted to outright. And others she would eat one day and be fine and then the next day she would react, even if t was the same batch. That was sometimes down o the food and sometimes down to a pan. So if I had made wheat pasta the night before for me and DP, and then used the same pan to cook some rice or gf/wf pasta for her she would react. It took me ages, nearly a year to figure out that cross contamination was an issue, so now I have separate pans for her and also wash their stuff by hand as our dishwasher isn't the best at cleaning.

yellowballoons Fri 23-Aug-13 16:14:13

Yes, I took the relaxed atiitiude because my sons are also asthmatic[again one of my sons is no longer asthmatic for the time being], and also they were also in and out of hospital regularly with croup [again, that has disappeared for the time being].
I purposely took the relaxed approach, because the alternative was too awful for me to contemplate.
I knew I could easily end up in a distressed, very unrelaxed state, which wouldnt have helped anyone.
I sort of took myself in hand, and gave myself a strict talking to.
I realise that not everyone is able to do this.
I also have a naturally chilled realxed husband who I was able to offload on to.

yellowballoons Fri 23-Aug-13 16:15:09

On of my sons is diagnosed severe allergic to nuts btw, and he still has it.

yellowballoons Fri 23-Aug-13 16:17:25

They too actively take the relaxed approach, because they wanted to, and are, getting on with their lives.
They have to show the protocol to where they work, and the immediate staff have a copy and are given a staff work through of it.
We also bear in mind where the nearest hospital is as regards to where they live and work and when they go on holiday, especially if to an island.

ukey Fri 23-Aug-13 16:20:49

sorry but what is 'not good' about restricting a child's diet if the food you are restricting has the potential to kill them?

I don't think any of us have mentioned that we need to be 'perfect' or have 'perfect' results. But we all do what we feel is best for our children.

And as for doing a 'tongue tingle test' that is very dangerous, but if that's where your comfort zone lies that's fair enough!

I will do all I can to avoid the risk of anaphylaxis.

yellowballoons Fri 23-Aug-13 16:21:42

As regards the centiles, they were premature [twins]. One managed to reach the bottom line growth wise, one never did.
One had problems as regards breathing, even when born, so they have never been normal as regards weight or height. Again, they and we juist get on with things. It has not held them back. Only possible thing problem wise may be girlfriends. Difficult to tell necessarily. Should add, they are now adults and about 5 foot 6 inches. Amd one is still a little underwieght.

BalloonSlayer Fri 23-Aug-13 16:22:28

In that case I should stick by your original advice - avoiding everything with warnings. For two reasons: because it was the original advice, and because it's what you feel most comfortable doing.

You are the one who has to cope with feeding DD, so don't let some patronising Doctor make you feel silly. 15% is an OK percentage, actually. Included in the 85% of people who don't act the same as you are:

- people like me who have been given advice to note the warnings, watch their child and give it anyway

- people who have been advised to heed the warnings but think the warnings/this advice are bollocks

- people who have been advised to heed the warnings and always did until one day they didn't check and their DC was fine so since then they have stopped worrying so much

- people who don't always check ingredients every time they buy something

- people like my sister who are quite lackadaisical about it all and needed pressure to take their DC to an allergy clinic when they had obviously had an anaphylactic reaction, have one epipen at the back of a cupboard, and react in a bemused but not ultimately concerned fashion when they take their DC to a curry house (he hates curry) and he spends the night puking because his curry "must have had nuts in ha ha!" hmm

Look it is hard but you will get through it and you are doing all the right things.

I remember being gripped with fear when DS1 first got his epipen aged 1. I remember thinking with horror and grief of how he would never be able to go anywhere, eat out, never be able to go to tea with anyone or go on any school trips . . . he is 13 now and has just come home from a residential trip abroad, had a great time. I had to send food for him but it was fine!

yellowballoons Fri 23-Aug-13 16:26:53

ukey. I am not meaning to upset anyone. It is not meant personally. But mumat says she is struggling, so I am just saying how we do it in our household, and what works for us.
The alternative is not good is it?

Didnt know a tongue tingle test is dangerous.
My son, as I say is severely allergic, so either 5 or 6? And it works brilliantly for him.

To me, and for me, a mum in a distressed state isnt helpful to a child.
And if the tongue tingle test works, they why not?

I was talking about restricting her son's diet with all sorts, when he doesnt have any diagnosed allergies.

yellowballoons Fri 23-Aug-13 16:28:23

Balloonslayer. Sorry, forgot there was another "Balloon" about?
Would you like me to namechange? No bother if I do, I often name change.

BalloonSlayer Fri 23-Aug-13 16:29:58

Good grief no - there are loads of us balloons about! grin

I am a bit dangerous to the likes of you though wink

ukey Fri 23-Aug-13 16:32:15

also I am sure you all read the news article about the young girl who died at a summer camp in USA, she put a rice krispie cake in her mouth, realised it had peanut butter on it and spat it out instantly..........this girl showed no immediate signs of anaphylaxis, yet died a short while later despite being given 3 epi pens, anti histamine and oxygen. Epi pens may not save your child's live. The only way to keep them safe is to avoid their allergens!

We are relaxed, we climb trees, go out to play, go on holidays, attend parties, lead a normal life, but we ARE very careful about food inc may contain warnings as those are risks not worth taking! we also deal with asthma, hay fever, eczema etc. I don't see how having asthmatic children is a reason to be more relaxed. Its easy to be relaxed and able to join in and enjoy life as well as being careful where allergies are concerned. Simply taking safe treats and snacks out with you, to parties etc.

yellowballoons Fri 23-Aug-13 16:36:36

Your DD has had 1 reaction?
Do you want to describe it and what happened?
Perhaps if you can work throught the fear of that, then that would help you?

I will describe what happens to mine.

First off, my son[the severe one], always has his epipens and pills on him absolutely whereever he goes.
We were told he has 15 minutes from when he has a reaction, to when he gets the first epipen in him, so they always have to be on his person.
He has the epipen and pills. Someone calls an ambulance. He has the second epipen 15 minutes later[he has to keep an eye to make sure his epipens are in date].
Then off to hospital.
That is it. He is kept in 2 hours for further observation and then released.

yellowballoons Fri 23-Aug-13 16:37:58

I will be careful of you Balloonslayer grin

yellowballoons Fri 23-Aug-13 16:38:56

I will read the article ukey

ukey Fri 23-Aug-13 16:43:33

not always as simple as that, and should be observed for far longer than 2 hours following anaphylaxis in case there is any biphasic reaction, also usually requires a course of pred

everyone who is at risk of ana should carry 2 in date epi pens and antihistamine anyway. But that doesn't mean its ok to take risks.

yellowballoons Fri 23-Aug-13 16:51:01

He doesnt take risks, unless you are meaning the tongue test? Didnt know that was a risk, somehow think it isnt. I will look that up too.
He literally just sticks his tongue on whatever food he has a slight doubt over, not an actual nut obviously.

yellowballoons Fri 23-Aug-13 16:51:59

If a doctor observes for 2 hours, and then realease him, that is ok for me.
I wouldnt dream of thinking I knew better than the doctor.

yellowballoons Fri 23-Aug-13 16:54:05

He has 6 epipens. Two on his person. 2 is say his rucksack. And 2 in the back of a cupboard.
What with my other son as well, we always had 12 epipens in total around the place.
I think nowadays, children are not issued with as many.

yellowballoons Fri 23-Aug-13 17:03:37

tongue tingle test. Cant find anywhere on the internet whether that is a good thing to do or not.
My son has never had an anyphlactic shock form doing that, so I cant see that doing it is a problem, for him at least.
He took it upon himself to do it.

yellowballoons Fri 23-Aug-13 17:09:23

In the article you mention ukey, she took the rice Krispiet can happen to any of them. We soon realised that our sons were in most danger when outside the home, and in party situations.

She ate the rice Krispie and then spat it out as she immediately realised it had nuts.
But unfortuneately her dad did not then give her the epipens immediately.
He only had 15 minutes. But it was longer than that by the time she had any, and by then, tragically, it was too late. sad

yellowballoons Fri 23-Aug-13 17:11:22

mumat. No one has been able to help you with the cokkery courses. I was partly hoping, that by keeping the thread going, that someone would have helped you with that, but they have not. So perhaps, they do not exist?
Hope the groups you are going to contact can help you in that regard.

ukey Fri 23-Aug-13 17:18:30

I would hope that when they do send him home they ensure he has someone there who will be able to keep an eye on him in case he has a biphasic reaction!

From Anaphylaxis Campaign

In some cases there can be a secondary (biphasic) reaction. The time of occurrence of the second response can be anywhere from one hour to 72 hours after successful treatment and resolution of the initial response. Biphasic reactions can range from mild, not requiring further therapy, to potentially fatal anaphylactic attacks. Patients need to be warned that a second (biphasic) reaction may occur and clearly patients need to be observed for some time after initial symptoms have resolved. This will vary from case to case and may be for up to 72 hours in some.

ukey Fri 23-Aug-13 17:23:38

yes they didn't give epi instantly because she showed no sign of a reaction.

how old is ur son?

yellowballoons Fri 23-Aug-13 17:25:00

We have never been told about a possible secondary reaction by anyone at all. Medical or otherwise.
So thanks for pointing that out.
Perhaps that is relatively new advice?
My son last had an anyphlactic shock 10 years ago. No reactions since apart from occasional tongue tingles when he has tried new foods. which he obviously does not them continue eating [but these have never progressed to ana shocks]

I will send the info on to my sons, both of whom no longer live at home.

yellowballoons Fri 23-Aug-13 17:26:16

Sons are now 24.

babybarrister Fri 23-Aug-13 17:28:32

I really think k you would get a lot out of the Anaphylaxis Campaign workshops

There is also a meeting of the AC at a Hindu temple in Wembley on 10th September at 7 pm if you are interested

In relation to warnings on labels the reason many of us do not take them seriously is that there is no logic to them as at the moment their use does not reflect the actual level of cross contamination. Like Trixy I do though exercise extreme caution re chocolate as the production lines are very difficult to clean I am told.

Whilst of course there are exceptions, the actual chances of a fatality if an epipen is used fast are very, very low indeed. There are about 40 deaths per year from food allergens in the UK - I understand that the vast majority did not use epipens - have a look at the UK Rescusitation Council Guidelines on the Treatment of Anaphylsis - they give the definitive response to questions as to how long you should stay in hospital etc, as well as the fatality sts

I have seen my DS unconscious so I am aware of how you feel ... Please do stay on these boards as they have been a godsend to many of us

babybarrister Fri 23-Aug-13 17:31:17

www.resus.org.uk/pages/reaction.pdf - this is the report which gives lots of info re biphasic reactions amongst other things

I always recommend to everyone that they read this document from start to finish

mumat39 Fri 23-Aug-13 17:34:10

Hi again.

Yellow, you sound like a very cool headed lady. I am clearly not cool headed or in any other sense of the word. grin

We were given advice which I have followed. But the labelling of food has changed so much over the last 5 years that it causes me no end of problems.

My Dd has had two anaphylactic reactions to wheat, and they were both serious enough to scare the life out of me. She has had many many many more reactions than just 1. Varying in severity, but as I was so scared I was always there with the piriton ASAP. I have spent too many hours in A&e as the piriton doesn't seem to work quickly for her.

Basically, I am worn down with worry. I have lost confidence with food and as a result I posted on here.

Balloon, you are right the doctor is patronising. He knows I don't cope well so I think he likes to play things down

I also started feeding DS the same as dd as he couldn't eat anything without always sneezing, and I was scared of my dd coming in contact with that. I had PND after my son was born and he wasn't thriving, and it was all too much and the last thing I wanted was a trip to a&e.

I have become just too scared to try now. I am still suffering from depression and anxiety, which is bad on a good day. People are always telling me to chill and just go o an Indian restaurant with dd, or just let her eat it, it'll probably be fine. I read a white paper, bill I think, online, and DD's allergy doctor is actually talking bollocks about the no deaths from a may contain. This was years ago, and I have tried to find it since, but it was a paper to assess the effectiveness of Epipens, presumable commissioned due to the increase in allergies. The was a case of a teenage girl who wanted chocolate. She decided to eat a bar that had a may contain warning. She had some, and immediately reacted. She administered an Epipen but to wasn't effective and she died. I believe this was in the UK.

I am the sort of person who tries to understand about things so will research things and I think it's my experience of feeding dd and what I've read that makes me think I really don't want o take a risk.

I posted on here, because I am increasingly finding it hard. Just the simple things like not being able to go out without thinking about food for my kids. In the early days I tried ordering 'safe' food in pubs and restaurants, but she reacted everytime. It was after she was given Epipens that I actually started to be scared.

Yellow, I know you say you are not trying to be harsh, but I don't chose to be like this and I posted for here for help. The doctor has already made me feel rubbish about things and does whenevr i seem him, which is why I'm asking for advice.

Telling me to just try, hasn't worked. My fear is very real and very irrational but I am still controlled by it. I hate that about myself.

Likeaninjanow Fri 23-Aug-13 17:35:09

My ds2 has similar allergies to your DD, with the exception of wheat & rapeseed oil. I know how stressful it can be & we've had to use our epipens.

I find that having a list of meals he can eat really helps. I can then just rotate them. I don't think it matters that he's not eating a massive range of foods at the moment. Hopefully we can expand the repertoire as he gets older (he's 5).

We do allow 'may contain' foods, with the exception of chocolate, so similar to others on here.

babybarrister Fri 23-Aug-13 17:35:15

www.anaphylaxis.org.uk/events?id=202

This lady is excellent and one of the Trustees of the Anaphylaxis Campaign - could you get along?

yellowballoons Fri 23-Aug-13 17:35:54

In the article, it does not give a definite timeline.
Form what I can see, it is possible that the dad did not administer epipens immediately after she vomited, as it appears that neither the girl or her dad had the epipens on them, and had to ring up the mum. Bu which time, it was sadly too late.

On occasions, elspecially after my sons were first dagnosed, we had to turn back from going somewhere, as I would say to them "have you both got your nut stuff" and them still being quite young at 8 or 9 would say no.
From the start, because they were that age, and not younger, my husband and I decided that they needed to be in charge of their medications.
We would oversee, but it had to be their responsibility to remember. As we knew the situation would go on and on, so best to start it with them right from the start. And also, it helped them to realise the seriousness[though we didnt down play it, but also tried not to let it overtake their lives]

I realise that the op has it more difficult as her DD has more things to watch out for, and at her tender age, it is all a bit much for her to take in properly.

ukey Fri 23-Aug-13 17:39:55

well perhaps as u were unaware of biphasic reactions, u may have also been unaware of current advice re may contain warnings, and tongue tingle tests. Ok wee one is only 7 so I advise him and those caring for him to avoid his allergens including may contain, made in a factory that also handles etc This is the advice most people who have allergies stick to. As well as what anaphylaxis campaign recommends. I know for mild allergies and some intolerances may contains are perfectly acceptable. But to me if it says may contain nuts it may as well say may contain arsenic.

Obviously he always has his emergency bag with him at all times, inc 2 epi pens, anti histamine, inhaler and spacer. at school he has a bag that is with him at all times with all meds in it inc his 2 epi pens, plus a further 2 epi pens at the office.

yellowballoons Fri 23-Aug-13 17:44:48

I personally wouldnt take her to an Indian restaurant.
My sons keep to the same dish at our local chinese, a simple dish, and are happy with that.

Could you do as Likeaninjanow suggests? Have a positive list, instead of thinking about the negative ones?

A positive list sounds better, and may make you feel a bit better?

Perhaps when she is older, say 8 or 9, she could do the tingle test?

Ultiamtely, she will take over her own life, and decide how to live her life as she wants. She may choose to try things out, or she may choose to stick to just a few known defintiely non allergic foods.

mumat39 Fri 23-Aug-13 17:46:21

I was recently told by our allergy nurse that anaphylactic reactions can take up to two hours to happen. I always assumed they were immediate, but that's not the case.

Also, the tongue tingle test isn't going to be safe for everyone. It's brilliant that your dc have a strategy to ensure something will be safe for them but it was definitely something that we were told to not try. In the allergy nurses words, 'you don't want to go near that'.

I think for me, part of the problem is the advice seems to be so different and although it's great to talk to people about their experiences, I often find I am more confused afterwards.

Baby barrister, my parents live in Wembley, so I'll definitely look into that workshop thanks. And I will call the anaphylaxis campaign. I tried today a couple of times but my dc seem to know when I'm about to go on the phone as they either start calling for me, or bickering or just playing up. I'll try tomorrow when DP is at home.

Yellow, I have looked into courses over the last few years and did have some kind offers of people coming to our house, but I really want to do something away from the home. In a neutral environment, and that's the sort of course I haven't found yet. I'm thinking about maybe contacting someone like Tanya Wright. I've just ordered her recent book, so hope that will be of some help.

Thanks everyone. thanks

mumat39 Fri 23-Aug-13 17:49:57

Ukey, we were made aware of the possibility of another reaction and were old to keep giving piriton for a period of 48 hours. Does that sound sensible to you?

Thanks
.

ukey Fri 23-Aug-13 17:50:11

yes you can have delayed anaphylaxis so its not always instant!

ukey Fri 23-Aug-13 17:52:19

depending on severity of reaction yes, and just observe for signs of a second reaction, sometimes will also require a course of prednisolone following a reaction too!

ukey Fri 23-Aug-13 17:54:21
yellowballoons Fri 23-Aug-13 18:01:01

My sons bag has epipens, and 2 sorts of pills, cant remember which sorts right now.
He has to have an immediate epipen, and 2 lots of pills.

Wher does it say that tongue testing is dangerous?

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?]
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.

Can you try and think of the epipens are her life savers?Which is what they are. I think of them as immediate doctors on hand.
Because, even if doctors were standing right next to your DD when she has a shock , that is what they would do . Give her the epipens and pills.
When my son went to hosiptal, the doctor said "oh good. I dont have to do anything. He has had the epipens and pills. That is what he needed. Normally I have to do that part. I dont have to do anything more, as he has already had what he needed".

yellowballoons Fri 23-Aug-13 18:02:14

prednisolone, that is definitely 1 set of pills that he has.

yellowballoons Fri 23-Aug-13 18:04:49

Hope you get the practical help you need mumat39.

ukey Fri 23-Aug-13 18:11:31

there is NO way I would encourage 7 yr old allergic to nuts, peanuts and egg to attempt a tongue tingle test! He knows how to check labels, (tho new allergen labelling will be introduced soon where allergens must be included in the ingredients list and in bold) He has mild issues with milk too. He is perfectly able to enjoy things and make the right choices about what is safe for him to eat by checking the labels. And always knows to have his medicine bag with him at all times.

he is ana to nuts and peanuts, and reacted with lip swelling to traces of egg (not ingested) tho prior to that he reacted with an itchy throat to malteasers bunnies that also may contain traces of egg. So id see putting anything potentially allergic near his mouth to be a huge risk of a reaction. Id say putting may contains on his tongue would potentially cause a reaction. With egg wld prob cause swelling poss further reaction and who knows what may contain nuts wld cause as have never risked that! (Egg is a relatively new allergen to us)

BalloonSlayer Fri 23-Aug-13 18:13:13

I have heard of people, when worried about trying their child with a new food, actually parking at the hospital and giving it to them in the car . . . knowing they were seconds from A&E if anything did happen.

That has never been an issue with us as we know what DS1 is allergic to and that's that. But if I was worried about him being allergic to something new that I knew he would come in contact with, then I think I might well have done that.

We got used to always having to take food for DS1 wherever we go. It's inconvenient, and boring for him, but there used to be no choice. Now he is older we can often find him something.

But please be kind to yourself. This IS hard. Don't listen to people who tell you "to chill and just go o an Indian restaurant with dd, or just let her eat it, it'll probably be fine." Or you could suggest to them that they should chill and let their DC swim with sharks, it'll probably be fine. hmm People just have no idea. Eventually you'll just tune them out.

trixymalixy Fri 23-Aug-13 18:29:30

Um yellow balloons, I linked to two allergy cooking courses way down the thread so they do exist!

shock at tongue tingle test!!

I was thinking about you tonight as I was cooking the kids dinner mumat39, I made chicken pie, it's my DC's favourite. If you're interested let me know and I can post the recipe.

I agree with likeaninja, you need to develop a list of recipes and just rotate them. I don't give the kids a massive amount of variety, they pretty much have the same things each weekday, e.g, Friday night, chicken pie. Wednesday night: spag Bol, Saturday night: make your own pizzas.

Tomorrow I'm trying something new, coca cola chicken wings. I'm sure it'll go down like a lead balloon.

I wouldn't take your DC to an Indian restaurant, too risky IMO.

mumat39 Fri 23-Aug-13 18:49:26

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

bronya Fri 23-Aug-13 18:53:45

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!

bronya Fri 23-Aug-13 18:56:51

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!

mumat39 Fri 23-Aug-13 19:04:43

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 shock

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.

Angelik Fri 23-Aug-13 19:11:28

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.

mumat39 Fri 23-Aug-13 19:13:08

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.

mumat39 Fri 23-Aug-13 19:18:08

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. confused

Thanks again.

mumat39 Fri 23-Aug-13 19:20:43

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,

Likeaninjanow Fri 23-Aug-13 19:26:51

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)!

bronya Fri 23-Aug-13 21:54:15

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.

bronya Fri 23-Aug-13 22:04:40

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.

bronya Fri 23-Aug-13 22:05:01

*Love Life

mumat39 Fri 23-Aug-13 22:13:45

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. thanks

mumat39 Fri 23-Aug-13 22:14:36

Bronya. Sorry. Auto correct is weird!

mumat39 Fri 23-Aug-13 22:15:55

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

bronya Fri 23-Aug-13 22:22:54

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!

Likeaninjanow Fri 23-Aug-13 22:39:56

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. smile

mumat39 Fri 23-Aug-13 22:45:23

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

mumat39 Fri 23-Aug-13 22:46:16

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

yellowballoons Fri 23-Aug-13 23:06:52

Epipens brill. Lifesavers.

ukey Fri 23-Aug-13 23:25:19

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.

mumat39 Sat 24-Aug-13 01:17:30

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

thekitchenfairy Sat 24-Aug-13 04:55:22

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 grin.

ukey Sat 24-Aug-13 11:12:30

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.

mumat39 Sat 24-Aug-13 13:03:01

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

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. thanks

trixymalixy Sat 24-Aug-13 17:32:42

Mumat39 I have put the chicken pie recipe on a separate thread here. I'm hoping other MNetters wil add some others.

mumat39 Sun 25-Aug-13 00:07:45

Aw trixy, that's brilliant, and so so kind. Thankyou!

I didn't know you could get gf pastry. I'm off to google it now.

thanks so much. xxx

londonmum123 Sun 25-Aug-13 10:41:01

Hello mumat39,

I don't come on here very often these days but saw your post and my heart went out to you. I remember the breadmaker fiasco and how hard you were trying to cater for dd.

I'm in London too, why don't we meet up one day? I'll PM you later (in soft play hell at the moment).

On the food front, I batch cook masses at the weekend (work f/t) then freeze in ramkins for the week. I'm sure all my recipes could be adapted for your dd (and they're simple). I'll post when I get some time...

londonmum123 Sun 25-Aug-13 10:42:28

Or ramekins!

mumat39 Sun 25-Aug-13 11:05:25

Thanks londonmum.

It's nice to hear from you. I often wonder how you're doing. I hope your dc are doing well and that you are too. I'd love to meet up and also to try your recipes. Thanks so so much.

We're out today, leaving in a mo, but I'll catch up with you either today or tomorrow.

Thanks so so much. thanks

MistyB Sun 25-Aug-13 23:38:04

If you wash Quinoa well before cooking it is much better!! Gwyneth Palthrow has a nice recipe in 'It's all good' but that book has almonds and eggs in loads of the recipes so not super useful.

tatt Tue 27-Aug-13 08:30:41

Hi mumat39. I've been dormant for a time smile but was one of those who asked mumsnet for this board. I heard there had been some strange advice on this thread. Some doctors dont have a lot of experience in allergy so lets assume its just misguided and try to correct it. This will have to be a long post.

I've had the dubious privilege of seeing a paediatrician with a so called interest in allergy and a paediatric allergy consultant and there is no comparison. Attitudes have changed a bit but I can not see the allergy consultant ever recommending a tongue test or that someone who has had an anaphylactic reaction should only be observed for 2 hours. It certainly wasn't the advice when my child was small. Also something that hasn't been mentioned - exercise makes reactions worse, therefore someone who doesn't normally react to a substance may have a delayed reaction to it after exercise. Everyone with an allergic child should be aware of exercise induced anaphylaxis (term for googling it).

My child is now a teenager and in many years of dealing with their potentially anapylactic nut/lentil allergy I have only met one parent with a laid back approach to may contain warnings. Her children tested positive but had never had anaphylactic reactions. As far as I know they are fine but knowledge has moved on, we know some people are allergic to more types of peanut protein than others and some of those with a nut allergy diagnosis may never have an anaphylactic reaction. Some people ignore the warnings (especially those on bottled water) but with varying degrees of trepidation and always with epipen to hand.

Epipens don't always work, you're right about that. However we do need to try and push that to the back of our minds and get on with life. Deaths are extremely rare in those who carry epipens and use them at the first sign of trouble. Therefore you focus on ensuring your child is so brainwashed that they never eat unless their epipen is handy. Mine has a leg holster for situations where they can't easily carry it any other way and medic alert wristbands. We've joked about tattoos. Despite their allergy they have done normal teenage things like Duke of Edinburgh and we both travel and eat out.

To get back to food - I was going to suggest a breadmaker, I missed the fiasco but some types do much better gluten free bread than others. My family joke about my cooking skills but I can turn out an edible loaf with Doves flour and the mumsnet recommended Panasonic. Xanthum gum is a miracle gluten free ingredient and if you like Indian cooking gram flour is gluten free. www.bbc.co.uk/food/chickpea_flour

Your child needs to develop a taste for potato. Follow the Jamie Oliver 22 tastes advice and try to vary what she has. Mashed potato with a bit of margarine or bisto best (some are gluten free so must be wheat free) gravy might be worth trying.

My child felt badly about their allergies when the age your child is now. They begin to understand they aren't immortal. Now they don't see their allergy as a problem, they have learnt to shrug off the times they can't have something and find a substitute. They can have sweets, they just have to be careful about the type. They carry emergency food rations whenever food may be an issue. Hope this is some reassurance that (a) it's normal to worry and (b) it will get better. Another epic post later about skin prick tests.

tatt Tue 27-Aug-13 09:25:56

sorry - googled chickpea and it was a legume. Good warning not to trust any internet nutter completely! Back to meat and potatoes and Sainsburys free from Fusilli (only corn and rice flour, no egg). Also she needs to have some fish or fish oil as she doesn't have rapeseed. Will she eat oily fish? If not she needs a supplement with omega 3 fatty acids. There are some wheat free sauces, they tend to be the tomato based ones. Look for maize in the ingredients list.

If you get a few decent nights sleep it will make a major difference to how you feel about this. I'm not terribly keen on drugs so suggest warm milk at bedtime, a warm bath with magnesium salts in it and some valerian tea.

Now the epic about skin tests - mine has also tested positive to lots of things, one of them they can eat quite safely and one carefully. We know this because the paediatrician interpreted our concern about pepper as capiscum and tested for that. They'd eaten it for years with no sign of a reaction. Once they have had a test for something they react badly to (like nut, or for your child wheat) their histamine levels rocket and I believe they react to any damn thing going. For that reason I wouldn't let mine have a test for their worst allergens if they had more tests. Mine tests positive for soy but although soy in large quantities or as soy milk produces reactions tiny amounts in food don't. Kelloggs raisin bakes are one of our emergency food rations so a positive soy test was a pain but my DC still eats it. First time they tried after the test it was a crumb and wait an hour before trying any more. Same with capiscum. We allow, even encourage, regular eating of this this because of the research suggesting that you can sometimes produce tolerance to an allergen by exposure to tiny amounts of the allergen. We hope to preserve tolerance. We wouldn't do this with foods that that hadn't already been eaten safely before testing.

It is possible that your child may be able to safely eat some of the foods you avoid. The only way to test this would be a food challenge with a tiny amount of food containing a cooked version of the allergen (because cooking changes proteins and usually the cooked versions of food are less allergenic, peanut is an exception). I can understand this would be terrifying for you but do consider if you could try (separately, not at the same time) a little well cooked egg, a trace of soy, perhaps chickpea. If she could eat these it would change your life. Egg allergy is often outgrown. The way to try foods should be in a hospital with adrenaline nearby and resus equipment available if needed. Few hospitals seem to offer food challenges and you might have to ask for them. However even if you don't feel able to try them the thought that she may not react if exposed to traces in food with "may contain" warnings may help the anxiety. I think I first suggested on mumsnet the "sit in a hospital car park" approach after seeing it mentioned elsewhere. NOT to be used for any food that has previously produced an anaphylactic reaction or a food with a positive test, this must be in hospital, but for foods eaten safely, trying an allergic child with a new potentially allergenic food or testing a sibling.

Will try to remember to look next time I'm out for suitable sauces and to check what my DC is now cooking.

tatt Tue 27-Aug-13 10:00:11

and another - should have said this first. When my DC was younger there were times when all I could see was bloody allergens lurking everywhere to catch me unawares. I was terrified at times and when another mumsnetter told me it would get better I felt they didn't understand. smile With time you - and your child - become better at coping and the lack of reactions makes you feel more secure. Then something goes wrong and you deal with it, survive and feel both more insecure and more confident. I can still remember the black cloud that was the diagnosis, and the tears of relief that we would finally get an epipen (we have 4 Jext now). You are not a bad mother for struggling with this, we all did.

mumat39 Tue 27-Aug-13 11:53:13

tatt, thanks so much for your excellent and very helpful posts. I'm so pleased that olive mentioned the fact that a tongue tingle test is actually not to be practised. I was going. Report this aspect of some of the posts to MNHQ as I was worried that anyone new, looking on MN for advice, might think this is a recommended approach.

I often wonder about trying small amounts of my DD's allergens. For example she has never eaten eggs for exampl, yet when she was first tested for this the reaction on the skin prick test was huge and rast tests was very high. Infact, alot of the things she was tested for were a bigger weal size, and rast amounts than wheat which is what she had an anaphylactic reaction to. So in my head, I am sort of convinced that she will have a more serious reactioN to those things that she tested 'higher' for.

She has very itchy and sensitive skin, so I wonder if the skin prick tests are actually an over reaction, if that makes sense. I am too scared in reality to try some of these things.

Alot of foods on the list are ones that I've discovered when we first started weaning.

I'm sure the doctor we see is a paediatric allergy consultant, but I might PM you if that's okay, to see if you know of anyone else that we could be referred to as there is something about his 'way' that makes things more difficult for me instead of easier. Iykwim?

My DC do lead relatively normal lives. Last year we went on our first self catering holiday, and it gave me confidence, so this year we got on a flight to Florida and self catered and had a great time. We all actually ate out in a restaurant in the Magic Kingdom, where the chef prepared chicken and gf/wf spaghetti. they were absolutely fine and the 'can do ' attitude of the chef was such a breath of fresh air. I'm actually considering going on a cruise next, almost to force myself to trust others to provide food for my dc. I've heard that cruises are good at catering for allergies, and I have always cooked for the dc and it would be lovely to have a break from that. I can't bring myself to book it yet though, but am trying to Make myself as I know my kids would love it. And I think so would I.

The reason I posted here for advice was on how to move forward at home. How to try new foods when dd seems to often be on antihistamines. The summer holidays would be perfect for trying things, but she seems to suffer from hayfever and tree pollen allergies.

I was also hoping for at least one negative result at the appt recently, but everything was the same as it has been. I forgot to say that at school, dd had eaten burgers which I had been told were 'safe' but found out recently that they actually had rusk in them. She was also 'accidentally' given some wheat pasta, but it's not clear how much she ate. I mentioned these at the appointment, and was hoping that the consultant would recommend at least rast tests, if not a challenge, but he again, sort of dismissed it without any consideration. All he said was that the school shouldn't be experimenting, which is of course right, but to me it was a glimmer of hope.

Anyway, it really helps to know others were where I am now and that things can and do get better.

Trixy has very kindly started another thread about recipes for allergies and her chicken pie recipe is one I'd like to try.

The have also been lots of very supportive posts on this thread and I am so so grateful that everyone has taken the time to post.

I am thinking I might get another bread maker. Swill have a look at the MN recommended one. Can I ask, does the recipe you use contain eggs? would you mind linking to the recipe that you use? Or pointing me in the right direction please?

Thanks for the tip about Jamie Oliver's 22 tastes thing. I'm off to google that now.

And thanks again, so much for your posts. thanks

mumat39 Tue 27-Aug-13 11:57:32

Hmm, I can't find anything on the Jamie Oliver 22 Tastes advice when I googled that.

tatt Tue 27-Aug-13 18:51:04

you're welcome to pm me but I think my lovely consultant retired sad. We moved so I'm not totally sure, I'll have to check.

Anyway he did give me some advice on how to introduce foods - first rub a bit of the food on the skin somewhere, the back is a common place but it can be an arm. Observe carefully (accounts differ on how long but I was told 15 minutes, others have been told 30) and if no sign of a reaction rub some on the face. Observe again then place a small amount on their lip. Observe again and if there is still no sign of problem they can actually swallow a small amount. If there is still no reaction they can try a larger amount but still keep to a smallish portion. Use cooked food if it's something new but once you know they are OK with cooked food you can use the same method for uncooked (if the food is normally eaten raw). If they are fine give the same food the next day, but only let them eat a small amount. If very nervous do this in a hospital car park but in London (so probably close to hospital) and with epipens I'd do it at home.

The Jamie Oliver bit was part of a TV programme, I think. It was just comments about how long children take to develop the taste for a new food and how you shouldn't give up easily. He said something to the effect that you should try 22 times. It's now a standing joke in our house.

As far as other people feeding them is concerned we've found expensive restaurants are much better as they cook from scratch. Friends went to a good hotel in Torquay, their child had soy allergy and the chef cooked especially for him. If you are thinking playdates few people do cook from scratch and sending food along/ suggesting something easy usually works. I may post one of our experiences on another thread.

Bisto gravy contains soy so that's out for you.

Sainsburys fish pie paste seems OK, Heinz tomato soup, most pea and ham soups, Seabrook crisps, Sainsburys Spanish style cooking sauce, Ragu original smooth bolognese sauce, Ragu tomato and sweet pepper sauce, Lloyd Grossman tomato and mascapone pasta sauce, blue dragon oyster and spring onion sauce. It's prety easy to knock up a stir fry with rice or pasta and sauce on days when you are sick of having to cook everything from scratch.

My bread includes eggs but there used to be discussions here about egg replacer. I think Orgran was the favoured one www.naturallygoodfood.co.uk/pdfs/a49bbdd196f64946ab3a81768a4c3544.pdf

The breadmaker I use has probably been discontinued but I think this is the equivalent www.amazon.co.uk/Panasonic-SD-2500-Automatic-Breadmaker-Program/dp/B004RTJWMC/ref=sr_1_2?s=kitchen&ie=UTF8&qid=1377625547&sr=1-2&keywords=panasonic+breadmaker

You've already found Pig in the kitchen but her bread roll recipe is here www.piginthekitchen.co.uk/2008/01/archimedes-gluten-free-bread-rolls-egg.html

babybarrister Tue 27-Aug-13 19:41:55

I agree with virtually everything Tatt said but do take issue with one point re may contain labels. I comment as the mother of DS who has had anaphylactic reactions and who has had to use epipen various times. We have been very fortunate in that we have also always been treated by a very expert paediatric allergist and not a general paediatrician. I also follow the advice given on the Anaphylaxis Cmpaign website and have spoken to people in the food industry. At the moment - tho hopefully this will change with lobbying being carried out by the Anaphylaxis Campaign - there is no logic behind the warnings at all. I am absolutely sure that the stricter warnings are due to advice from the public indemnity insurers rather than any reflection of actual risk.
Equally, if you buy say chocolate from an overseas supplier containing no additional warning, I would not trust that more than say Montezuma which has dairy and nut may contain warnings but with which we have had no problem.
I don't criticise anyone ho choses not to use 'may contain' but equally those who do have made their own assessment of risk smile

tatt Tue 27-Aug-13 21:46:32

Would you say you were laid back about the warnings then baby barrister - or do you ignore them but worry? You seem to be saying you rely on something you heard at an unspecified time past and that nothing has gone wrong since then.

The AC policy used to be quite emphatic about giving children a clear message to avoid any foods with a "may contain" warning, including anything in Tesco where they dont guarantee the ingredients. They thought all children found it difficult to understand the labels and got quite shirty when my teenager had no problem understanding them.

The AC know very well that if you are speak to the manufacturer about their products one day you may get a different answer the next - even if you get through to someone who understands the issue. Companies can change production between lines in the factory and the risk changes. Parents of allergic children can't spend all day every day speaking to manufacturers so it's impossible for parents to do proper risk assessments. The AC don't like Tesco labelling and therefore discourage one of the few warnings that helps assess risk.

If you talk to manufacturers you'll know that testing of products has improved as smaller amounts are detectable Even Kinnerton have stopped saying nut free and I trust them more than most. So more people chose to take risks, most know they are doing that.

We all have different attitudes to risk and how much risk you/your child want to take is up to you. I don't believe you can assess the size of the risk accurately. The focus has to be on always having the epipen and being so well trained that you dont panic when its needed.

trixymalixy Tue 27-Aug-13 22:37:06

Mumat39, I'm so delighted you went on holiday to Florida! I remember your post about being anxious about going on holiday.

mumat39 Wed 28-Aug-13 08:13:50

The labelling issue is crazy.

We used to buy M&s crisps for dc before. At sme point this year, they became not suitable for nut allergies. I always check labels, when I buy things even if I've bought them before. Logic tells me that the crisps probably aren't contaminated with nuts, but i don't feel comfortable with not heeding a warning. 😳

Babybarrister, do you know what the AC are lobbying for?

tatt Wed 28-Aug-13 08:29:27

mumat39 - some articles I think you'll find interesting www.upi.com/Health_News/2012/11/14/Children-most-apt-to-outgrow-egg-allergy/UPI-73141352941835/ and www.aaaai.org/global/latest-research-summaries/Current-JACI-Research/ingesting-baked-egg-may-help-children-outgrow-egg.aspx

As you can see parents who - under medical supervision - took the risk of using cooked egg were often (but not always) rewarded by having their child outgrow their allergy sooner. For some there were adverse reactions. If I was your place I would ask for a skin prick test to be done for egg and only egg so that the results were not affected by high IgE levels in reaction to other skin prick tests. If this still showed a large wheal then your child probably isn't going to be one of the lucky ones who outgrow their allergy. If the wheal wasn't massive then you could ask for a food challenge. As she has hay fever you might want to try and arrange a test in a month when the hay fever season is over and if you have a food challenge have it soon so you can try to increase tolerance before the next hayfever season.

This is one part of the AC approach to labelling www.tracestudy.com/about

mumat39 Wed 28-Aug-13 08:57:52

Trixy, I've been meaning to go back to my other thread and update it. Florida was excellent. We actually to a really good deal and loved it.

I had been told when I booked with BA that their flights do serve nuts to business class passengers,, but not in the main cabins. Was also told that they would make an announcement on the flight. When we boarded, I did asi was told and mentioned DD's allergies to the staff and was told the person in charge of the crew would come and speak to me. She basically told me that they do serve nuts in the business class section, but not in the main cabin. She also said that it is company policy NOT to make any announcements about passengers with allergies, and that it was entirely up to us whether we wanted to stay on the flight and carry on. I was actually really annoyed that they said what they did when I booked but then basically it was my choice to travel. As it happened apart from needing some on the flight on the way back, DD was fine.

The holiday was excellent and really good for me too. The Americans we spoke to in the supermarket and at the theme parks were so allergy aware, it was actually a real. Death of fresh air, in the sense that they understood.

I would holiday there every year if I could, especially as DD and DS absolutely loved it.

Xxx

mumat39 Wed 28-Aug-13 09:06:23

Real BREATH of fresh air. blush

babybarrister Wed 28-Aug-13 22:15:06

www.food.gov.uk/multimedia/pdfs/maycontainguide.pdf - this is the voluntary code for the food industry - would be so much better if in fact they all would abide by it!

thekitchenfairy Fri 30-Aug-13 07:01:52

Hi Mumat... How are you today?

I can't get into PM for some reason, see what you think of these, am I on the right track...

Fluffy American style pancakes

Baked rice ( delicious, shove in oven for 30 mins maybe whole family can enjoy)

Soup with GF pasta for added heartiness

How about agave syrup? Have you tried this?
Cheese? My DS is better with goats cheese options...have you tried these?

I will try to get into PM again later with proper info

Have a good day smile

mumat39 Fri 30-Aug-13 19:33:34

Thanks for the links, tatt and Babybarrister. thanks.

Tatt, I wonder if I'm actually making my Dd less likely to outgrow her allergies. I am so so careful. I have always thought, keeping her 'safe' from her allergens is the right thing to do. Many people have said I just need to give her a little bit, buti have never dared. Reading your links, makes me think everyone had a point and I have got it wrong. I sent an email to DD's allergy nurse to ask what she thinks.

Despite my being uber careful she still has odd reactions, like the other day, I have her a bath and we have washed her in aqueous cream for years. She came up in hives all over her face and her eyes. I gave piriton and it settled it. Yesterday after a bath, again she came up in a few lone hives over her back. She also had very puffy eyes when she woke up one morning, for no reason I could think of.

I suspect it's viral urticaria which she had had a couple of times before. It's hard to tell as it looks just like an allergic reaction. But doesn't itch, so I guess it must be.

Thanks again.

mumat39 Fri 30-Aug-13 19:35:06

TKF, I had problems with I thought my ipad yesterday but looks like it was a problem with MN. I have replied to your PM, thank you so much.

The three things you mention in your post above, sound yummy! Thankyou. thanks

tatt Sat 31-Aug-13 09:41:09

some of the more serious allergies aren't outgrown, mumat39, and sometimes even a trace is enough to provoke a reaction. So it it difficult to know what to do for the best. The desentisation work is only done with very very small amounts initially, smaller than you might achieve on your own or than other people think. Your doctor hasn't suggested food challenges yet, presumably because wheal sizes haven't dropped. With a very reactive child I'd be wary of doing anything without medical advice but I would want a test for egg on its own in the hope that would suggest introduction of very well cooked egg (e.g in cake) might be possible. Wouldn't think of trying anything else yet but would try to introduce foods she hasn't tested positive for and give them to your other child. I'd also give honey before the next hay fever season. I'm risk averse, though. A more daring strategy might produce benefits but it has also proved fatal, even doctors wouldn't try it for some allergies for years.

As it happens I currently have urticaria after a bad reaction to simple geranium bath soak. I was given omeprazole for other reasons and that actually has far more impact on the urticaria than antihistamine (even at my prescribed 4x normal daily dose). According to the dermatologist this is because it has an antihistamine effect (googling suggests it blocks histamine production in the stomach). There are downsides to taking omeprazole but I would love to ask an allergy consultant if it would be helpful for the severely allergic. You might ask your allergy nurse what she thinks about that and/or try giving your child milk to reduce acid levels in the stomach when she has a skin reaction. Sweet things make my urticaria worse and fat probably does so.

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