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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 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.

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