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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!

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.

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

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.

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

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!

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

Real BREATH of fresh air. blush

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

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 08:13:50

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?

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.

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.

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 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

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.

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

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.

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 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.

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.

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

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

Or ramekins!

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...

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

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 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

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