Dealing with DC's anger about allergy

[Weta]

I know this has been talked about before, and I've even given advice because until now my son (7) has coped really well although did get a bit down about it sometimes.

But he's seemed really angry in general since he had a bad reaction a couple of weeks ago, and I think it may be related to his allergy - feeling like it's unfair and feeling cross that he can't eat the same food as anyone else. I'm struggling to deal with it as it brings out really strong feelings for me too, the unfairness as well and then a kind of powerlessness that I can't do anything about it.

Any tips?

We talk alot, we agree it's unfair, we've taken a leaf from babybarrister and stand on chairs and shout (!) AND, I feel so shit about it all that I try to make up for the unfairness with a treat / present after a reaction.

I'm sorry it's so crap

Oh yes, I'd forgotten about the shouting! Will have to give it a go...
Hadn't thought about the treat/present after a reaction either (hadn't had one for a couple of years and he was younger then) - I always give something when other children are having things, and have finally faced the fact that he doesn't like dark chocolate and agreed he can have Lego next Easter instead, but after a reaction is a great idea. Though DH did bring him a new DVD to watch in hospital...

Actually he has been really lovely this afternoon, so maybe talking about it last night has helped a bit anyway :)

Your second post made me so :(

Bless his cottons, is it just chocolate? Or the dairy element?

We've just had a knarly evening - DS went to bed saying why am I so wierd, I did my normal, well everyone has something special but you know, it just doesn't rub does it ...

EveryonesJealousOfGingers - he's allergic to dairy and over the last few years I've tried various types of dark chocolate but cooking chocolate (!) is the only one he seems to like. He is all excited to get chocolate in the shape of an egg or a rabbit etc (obviously not cooking choc!) and then tries to convince himself he likes it but stops after a few mouthfuls and then doesn't want it again. This year was particularly bad as his non-allergic brother is now 3 and seemed to get mountains of choc eggs from other people (no family here but from pre-school, friends etc). I had just given them a choc rabbit and a marzipan pig (which DS1 loved) each but of course it was terrible when DS2 kept getting more and more as the days went on - so in the end we got some Lego this year as well to make up for it...

topiarygal sorry to hear you had a bad evening. Worst part is that you say those things but then they don't really see many of their classmates struggling with anything so debilitating, I guess there are a few with dyslexia so maybe I should focus on that although it seems a bit mean to point it out. I was trying to tell DS1 the other day that I thought having the allergy made him more mature (because of having to learn to say no etc) and that he would be better able to empathise with other people with special needs etc but that didn't cut it either (unsurprisingly!) although I genuinely do think those are positives that the allergy has brought. How old is your DS?

He's 8; agree that you can't focus on the problems other kids have in their class as its too close to home and can be mean. We do talk about kids who have physical disabilities (eg wheel chairs) or are deaf or blind and these do clock with my son - still no easier.
I think it does make them more mature, they're having to deal with issues other kids just don't have to - unfortunately that does little to rock an 8-year old's boat though!
PS thanks for kind words on my other rant

I wonder if you can buy moulds (sp? molds?) to make chocolate eggs, bunnies etc? Will google

You can! Have a look on Amazon eg this - I know that doesn't help with the anger at the moment but worth knowing for next year - bet you can get christmas ones too :)

Thanks so much for your chocolate suggestions. Will definitely look into both ideas, although I did try the ones from Dietary Needs Direct and he didnt like those (think they were soy-based but not sure). Though now he is very keen on the Lego idea and may well decide he prefers that!!

As for other kids, one of his issues is that noone else in his class is allergic (not in a significant way, anyway). Have explained that there are 15 kids in the school with epipens but that doesn't seem to help. And the dyslexia type problems are not public knowledge in the way his allergy is, so it's not really for me to draw his attention to particular kids' difficulties. One kid did lose his dad two years ago so maybe I can mention that as being the cross he has to bear - gosh, doesn't it sound awful searching around for other people facing dreadful situations??! I have sometimes wondered about setting up some kind of support group for parents at the school, but feel a bit awkward about it.

BB I think if you remain very calm and collected and back up everything you have to say with medical evidence, that really helps. When DS1 started school at 3 (in France) and I said he had a serious allergy, the headmistress looked at me a bit sceptically and asked what happened if he had dairy - but as soon as I detailed the consequences (keywords being hospitalisation and inability to breathe) her attitude changed completely.

In France they were obliged to draw up an individual care plan in consultation with the specialist - is there anything like that in the UK? I also make a point of requesting an appointment with the class teacher at the start of every year to outline his needs and discuss how things like birthday cakes, canteen and anything else involving food (eg cooking workshops) will be handled. Current teachers are great and tell me in advance if anything is planned so I can suggest an alternative or send something in for him, plus he has his own box of cakes and sweets in the teacher's cupboard if anything comes up like kids bringing in birthday cakes.

Good luck - starting school is such a hard transition for the parent!!!! But you will probably find they don't think you are neurotic at all, certainly your posts on here portray you as being very calm and handling things so well.

Hi Weta this is something I really worry about for the future. DS nearly 4 and no issues with allergies at the mo but due to start school in Sept and am worried not just about the increased possibility of a bad reaction and how the school will manage his allergies but also the psychological effect of being 'different' and having a life-threatening condition hanging over him. Sorry, really can't offer any advice as not been through it yet but just wanted to say that I think it's perfectly normal and understandable that he's feeling that way. I often feel really angry about my son's allergies and the unfairness of it all, even more so since my previously healthy 9 yr old daughter was recently diagnosed as coeliac - keep asking myself what did I do to deserve this? Very selfish I know and obviously I try not to let them know how I feel but some days it does get me down.

I'm trying to organise a meeting with the headteacher, class teacher and school nurse to discuss management plan for DS before Sept. I know they're epi-pen trained already and have dealt with allergies before but am pretty sure they've only dealt with nut allergies in the past and it's a bit easier to avoid nuts in a classroom than milk, wheat and eggs, especially as the kids get given milk everyday! Don't want to come across as totally neurotic but need to feel reassured that he's as safe as possible without being excluded or segregated - so tough to get the balance right!

Weta - definitely try moomoo chocolate, babybarrister is right. DS2 came with me to the allergy show last week and the moomoo chocolate was his favourite. There has been some serious thieving going on from my fridge this week and i'm going to have to go online and order some more.
I think it tastes like the kind of chocolate that the egg part of all the main brand easter eggs are made of. Lots of companies do egg moulds and eater shapes - christmas ones too that you could wrap and hang from a tree etc..
All 3 DS of mine dairy intolerant. 1 has been told that it would be better for him to try gluten free as well as so far it has shown to be of benefit. The other is also fructose and sucrose intolerant. For them i think they find security in knowing that they are not alone - particularly within the family.
Freefrommum - i get where you're coming from with the guilt. My DS all have the same as me, so i wonder if it is genetic.
A buddy system might be good as well - perhaps in schools as well. I quite like going out with friends with food allergies/intolerances. It makes me feel 'normal' to ask the waiter to do 'x' without adding 'y' when everyone else does it too

my DD hasn't yet expressed any anger at her allergy yet as I have always been able to provide suitable treats whenever we have been in situations when other kids have been tucking into dairy laden goodies.

She starts school as well in September so we will no doubt face plenty of challenges in the months to come. The only trouble for me in trying to explain that other children in her class might have other conditions or serious illnesses is that she IS that child with a life limiting condition - she has cystic fibrosis :(. Double whammy

Her CF team at the hospital do provide a psychologist service but unfortunately they are short staffed at the moment and it takes a while to get an appointment. Hopefully, by the time she might need the help they will be up to full strength.

At the moment any anger in this house is mine about the unfairness of it all and for DDs sake I hope it carries on that way for a lot longer

freefrommum sorry to hear about your DD's diagnosis, that must be really hard and involve a lot more work for you in terms of making food etc. Good luck with the school - it's just something you have to negotiate but they will probably be good. Drum it into your DS as well about only ever eating your food etc. I know my DS's teachers have always felt greatly reassured when they realised that he was actually very sensible about it and wouldn't be trying to take other kids' food.

auntevil thanks for seconding BB's chocolate recommendation, will definitely try to order some and see how it goes down.

mintyneb that is really tough having CF as well as the allergy to cope with and I am not surprised you are angry at the unfairness. Is there psychological help available for you? I hope your DD is one of the ones who grows out of her dairy allergy as at least that would make things a bit easier for you! And, as you say, that it carries on being you that's angry rather than her.

As for our situation, we saw the consultant at the hospital yesterday and it turns out they do have a psychologist attached to the allergy unit (and maybe other units as well I think) who will shortly come back from maternity leave, so the consultant is going to organise something!

that's great news Weta, hope you don't have too long to wait to see someone and when you do you are all able to get on with her. That can be a problem if you just don't naturally 'gel'. I thought we were getting on OK with our pyschologist until she said to me in a one to one session that I seemed to have had a 'worse than normal reaction to my daughter's birth/diagnosis' . This was knowing that she was a full term baby but had to have major surgery (all connected to the CF) at 3 days old and more at 6 weeks, not leaving hospital she was nearly 2 months old.

I'm not sure what the normal reaction should have been!

hopefully you won't come across comments like that! As to my DD, her allergy is getting worse not better so am currently not confident that she will outgrow it. It could cause problems in the future as people with CF need a high calorie diet as they can't absorb their food properly so if ever she got really ill and lost weight we are a bit limited in what we can give her to bulk her back up again if she can't have dairy. We have also been advised to keep her nut free as she started getting excema when we increased her dose of abidec vitamins at age 1, probably as a result of the peanut oil it is based on so that's a bit restricting too

anyway, she is extremely well and healthy at the moment and is coping fine with her dairy free treats so I just take each day as it comes.

mintyneb does your DD like avocado? This is a great way of getting calories and good fat into children who can't have dairy. My DS likes it mashed with banana. I also add olive oil to his salads or tuna in oil as I worry about him not getting enough fat. Btw I think you have every right to feel angry at the unfairness of your DD's diagnosis and you sound as though you are coping remarkably well given the circumstances. You've got to wonder sometimes about some of these so-called professionals and the things they come out with!

I reckon there ought to a chair in every house to stand on and shout a lot! Blimey Mintyneb, you've got a right load on there, sounds really tough and that you're being amazing.
On schools, if you haven't already (I do bang on about this I know) the Food Allergy Mums group have done a great document on managing allergies in schools. During this research, our main concern was inclusion of the child in school. To a great extent that inclusion came from the child being understood by its setting to be responsible for their allergies (though of course it still demands huge vigilance from the whole school community). I've been lucky with my kid's school as they are wholy focussed on inclusion, however, it has meant that my son has had to be very aware of what others are eating around him and to either tell a teacher or move to another table. He can only do this by understanding his allergy which meant really talking the whole thing through. I think this really helped us on the psych side of things. He's pretty clued up and so empowered to manage himself more. Still thinks it's pretty unfair. And it is.

Oh and diet wise - we added a meal to DS' diet and added lots of olive oil to all pasta and got him hooked on mayo we still do this as he's a right skinny little dude - something to do with his masses of sport!

Thanks Topiarygal but what is the Food Allergy Mums group and how do I get hold of the document? Sorry I'm new to mumsnet and not found my way around yet other than this forum

I second the food allergy mums group. topiarygirl pointed me in that direction when DS got given epi-pens. He isn't food allergic but it really helped.

Just another chocolate suggestion - Plamil do an excellent range of dairy free chocolate, made in a nut free environment - 'milky' as well as various plain ones.

My DD(9) also gets down sometimes. Especially this time of year when all her friends are having ice cream.( we have tried all types sheep/goat etc. - they still cause a reaction)

School are really good TBH and make her her own food if there's something on the menu she can't have.

I'm glad my DD likes dark Choc.

She has 6 easter eggs in the cupboard from people that forgot DD couldn't have them. We are trading them with her for jelly type sweets. Slowly, as even though she can't eat them, they are still hers
.
It can be so hard having a child with allergies.

muddyangels, can your dd eat soya? If so the Swedish Glace icecream has massively improved this summer IMO and the vanilla is pretty much indistinguishable (sp?) from normal ice-cream.

They also do a 'cornetto' type affair - haven't tried it myself, but DH (the dairy allergic one in this house) says it is very good.

One other thought - what happens to your dcs when they have a reaction at school?

I used to have pretty regular reactions at primary school (not food related), and always got taken to the school office, made a big fuss of, treats from the secretary while they called my parents - it helped a lot as everyone else thought it was a bit special :)

(Should say I was lucky in that most of the time piriton quick enough stopped it being too severe.)

My DS always liked sorbet and when the other DCs had ice cream he had that and made him feel special. The good thing is that he was lactose intolerant rather than allergic and after 8 years we have finally reintroduced all dairy products and he now appears to be fine with them, which is good as he goes to boarding school and I am not always there to help him chose what is right for him, he is very good at the things he knows he can't have. He has a weird allergy to bananas, which DH has too but really frustrates him as he is really into sport and he gets cross that others have banana fuel and he can't. He is however the only one on the cross country team allowed isotonic drinks between races instead of bananas which makes him feel special.

mintyneb the psychologist sounds awful! as you say, how are you supposed to react to a situation like that?!

topiarygal have had a look at the food allergy mums site and it's excellent! DS1 has always been really good with his allergy - we were living in France and now in Luxembourg and the onus is pretty much on the allergic kid to fit in, so he's had to manage the canteen etc since he was 4 (eating food that I provide). Like yours, I think he is clued up and articulate about it, which has really helped - just seem to be going through a wobble at the moment!

Takver my DS has never had a reaction at school (touch wood)...