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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.

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