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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 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.

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