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New nut / shellfish allergy - feeling overwhelmed

(15 Posts)
Lilpickle08 Mon 22-Aug-11 21:29:54

Hi there, my daughter aged 3 has had milk and egg allergies which she seemed to have outgrown. I naively thought her allergy days were over until she reacted to a tiny trace of peanut on some chocolate.

Her RAST tests today confirmed the allergy and a new shellfish one that we were unaware of. I am feeling completely overwhelmed, upset, worried for the future etc etc. I know these feelings are normal, I know they will subside (kind of!) and I know I will feel better in a few weeks / months time.

My son has eczema and I'm now worrying about him however. It just seems that I'm now going to be subject to a lifetime of worry and I'm a worrier by nature anyway so not sure how I'm going to cope!

Is there anyone around who would be prepared to chat to me about their own experiences and perhaps provide some reassurances. I think I need to gain a bit of perspective and not sure the copious amounts of wine I'm getting through is helping too much!

Thank you

shouldbeelswhere Mon 22-Aug-11 21:50:47

It's going to be fine. You will have times when you are more worried than others but now you know and you can avoid the allergens this will help to make it more managable. My DD had a severe nut reaction when she was 18mnths and now we avoid all nut products she hasn't had a reaction since we've known. What inparticular is worrying you at the moment?

Lilpickle08 Mon 22-Aug-11 22:07:53

Oh everything! She's going back to pre-school in 2 weeks, so it's dealing with the worry every day. Now I'm obsessed with the fact she sucks her thumb, so the implications of that - of other kids contaminating her! Then I worry about parties, about school as she gets older, of her teenage years (good god, I don't even want to go there yet really!).

It just seems such a massive thing. Some of my friends have been great since we found out, but others have been really quite rubbish and don't really understand the severity of it all.

I think I was possibly holding on to the fact that I might have made a 'mistake' and that her reaction wasn't allergic but now we have the facts and it's coming to terms with it properly I think. I know other kids have to deal with far worse, I know all that but it doesn't make it easier at the moment.

I've always been a glass half full kind of person unfortunately! This is why I need some reassurances! So thank you.

shouldbeelswhere Mon 22-Aug-11 22:15:54

ok deep breath. She's been to preschool before and didn't die (that's my nerosis sorry and mine sucks her thumb too!) Have you spoken to preschool and told them about the allergies? I gave ours the phone number of the allergy clinic and name of the allergy nurse. Do you have an epipen or piriton at preschool and have you given them a copy of the plan for if she has a reaction if you have one for home? I think I might be jumping a head here?

Lilpickle08 Mon 22-Aug-11 22:27:23

Not managed to speak to them yet but have emailed and told them about the new allergies so hopefully they will be in touch soon. I'm sure I will feel better when there are procedures in place. Have epipens and Piriton for them but I don't think the pre-school staff have been trained to use epipens so we'll see what happens there. I know it's not rocket science with the epipen thing as i tested our out of date one on an orange!

How long have you known about your child's allergy? How long does it take to feel better?!

ggirl Mon 22-Aug-11 22:28:20

I really remember feeling the way you do.I cried everytime I thought about it for ages.
And you are right it does get easier as you get used to living with it.
Things I have learned since ds was diagnosed 6 yrs ago (now8yrs old)

You can never really rely on anyone else to think about your childs allergies in the same serious way as you/partner do. I used to be hurt when people made msitakes or disregarded it but you have to look at it differently. Your child has to learn to be in control and by not totally relying on others to take responsibility this is a gradual way of allowing them to gain control.

You need to incorporate the allergies into everyday life and get your child used to discussing it with other , adults and children. It's never too young to start. Ds has had allergy bracelet since he was 2 and he learnt to tell people what it was from the beginning.

Your child needs to understand precisely what they are allergic to beable to make decisions about their own safety. This might seem ridiculous now , as your dd is so young but again I think you need to start young and gradually build up the info given.I gradually taught ds to recognise the nuts he was allergic to , then the words , then we discussed possible foods with hidden nuts etc. then eventually what sort of reactions may happen. Gradual though , not to scare the bejeezus out of them grin

The Anaphylaxis campaign is fab , join if you haven't already. Their parent workshops are great and worth trying.

Give yourself a few weeks to get over the shock . My ds is now only allergic to pistachios and cashews and raw egg. Things are improving (less so for peanut i think) but there is new research and trials so things may change in the future smile

Sorry for the essay. Mumsnet is also marevellous for support.

shouldbeelswhere Mon 22-Aug-11 22:40:09

echo exactly what ggirl says. Totally remember being terrified thinking DD would die. I think you just gradually get braver. I remember going from "oh this is no big deal" to "this is massive and no one is taking it seriously" (particularly my relatives). I think I still swing between the two but the feelings aren't so intense! This is a great place for support and i'd agree the Anaphylaxis campaign is really helpful.

My DD is now 2 3/4 and when she had her reaction at 18mths I paniced that I didn't know what to feed her as everything that we were used to eating seemed to have either nuts or cheese (she has an intolerance to cheese).

Lilpickle08 Mon 22-Aug-11 23:00:19

Thank you both of you for replying, it helps to know that others have been through it and come out the other side. Will look into the Anaphylaxis campaign and maybe try and attend a workshop or something.

Have seen the research at Addenbrooks too which looks promising. I think I need to take one day at a time rather than worrying about the future. It's hard though...

ggirl Mon 22-Aug-11 23:05:50

God yes don't start worrying about the teen yrs just yet.

Schools are usually great and knowledgable about allergies these days.
Concentrate on empowering your dd gradually and it will be second nature by the time they go to big school.
She will learn to ask before she takes sweets ,food etc

shouldbeelswhere Mon 22-Aug-11 23:10:30

I got a great little book from Anaphlaxis Campaign about a squirrel that's allergic to nuts my DD loves it and she always asks now "has it got nuts in it". I think focusing on helping the child learn about it can help you too as it kind of puts you in control a bit more if that makes sense.

Lilpickle08 Mon 22-Aug-11 23:23:25

Ah I saw that squirrel book - I shall get it, thank you! DD is starting to understand she can't have nuts so I guess it's just about reinforcing that. Hopefully I will start to feel better soon, she is completely oblivious to the worry thankfully!

louby86 Mon 22-Aug-11 23:47:30

Hi! I have a severe nut allergy and my parents found out when I was three too. My younger brother developed quite bad eczema really young and grew out of that and didn't really suffer with anything else. The schools I went to were fantastic and most now if they are aware of pupils having serious allergies will make their schools 'nut-free' which also includes writing home to parents to ask them to be mindful of what they put in lunchboxes so don't worry too much about that. My parents got loads of information from the anaphylaxis campaign and the teachers at school used a lot of it too to educate people in my class. I always remember on a school trip someone tucking into a cookie before me and screaming to the teacher that it had got nuts in it! I know you're naturally going to worry as a parent but please try not to worry too much, it sounds daunting to start with as so many things say they may contain traces of nuts but it really is a manageable condition. I made it through childhood without thinking that if missed out on anything or had to be treated any differently, if anything I became a pro at reading food labels and used to take them off other people for being to slow grin

Likeaninjanow Tue 23-Aug-11 13:09:36

As everyone has said, you'll be fine. It takes a bit of getting used to, and it's a steep learning curve, but you'll get there.

My DS2 is severely allergic to a long list of foods and, to be honest, we find nuts the easiest to avoid! However that will depend on just how allergic the individual is. He reacts on touch, but not anaphylactic on touch.

I myself have a shelfish allergy and I can honestly say it really doesn't impact my day-to-day life.

You will need to be sure the nursery/school staff are fully briefed and trained though. Definitely go over how your DD has previously reacted, early warning signs etc. The more you talk to your DD about it, the more safe she'll be. My DS2 (3 years old) will not eat anything from anyone without asking if it's a safe food and has it been checked.

Lilpickle08 Tue 23-Aug-11 13:27:41

Thanks for all your responses, it's frightening how common it is but it's nice to have this support and to hear other people's experiences. I'm feeling slightly less overwhelmed this morning - I should probably step away from Google though.

Picked results up yesterday and hospital were supposed to test for tree nuts and haven't so DD will need further testing which is quite annoying. Also the shellfish allergy we're confused about as it was testing for cod, tuna, salmon, mussels and prawns - she has cod and tuna all the time so certain she's not allergic to those, but we need to whittle it down.

It's frustrating having to wait around for testing then results etc. I think I will feel better when we know what we're dealing with fully.

ChocaMum Sat 27-Aug-11 00:29:19

Hi lil, I hope you are feeling slightly better. Sorry for being slow in a response, I don't come on MN everyday.

How you are feeling sounds just like what I was going through last year when my DD had her first anaphylactic reaction at 9 mo. I had frequent episodes were I felt like in was having a panic attack and felt so overwhelmed, and also in floods of tears. I also had lots of times of feeling really angry about 'why my DD, why can't she have a normal life, it's so unfair.' But it really does get easier. I think the first few months of clearing out your cupboards and working out what products and brands are safe was the hardest. Once you get into the habit of reading labels it's not as difficult as it is to start with.

There's already great advise form the lovely MN group. Do go down to personally speak to your DD's preschool and take an action plan like from anaphylaxis campaign. I found their online workshop for allergies really useful, especially from my dd's nursery plan. They mention things like advising against using cereal boxes when making things because most contain nuts. Make sure whoever is responsible for your DD is epipen trained and has annual refreshers. Your practise nurse or a community nurse can go to them to train them.

Please do take one day at a time, I remember thinking the same at how it seemed impossible, and is till do that now sometimes, but just step back and concentrate on now and tomorrow.

Also really go through the signs of anaphylaxis for yourself and your partner, because I wasn't aware until going on a workshop with the anaphylaxis campaign how seemingly mild symptoms like an unexpected hoarse voice or unexpected persistent coughing is an indication to use an epipen. And always remember and also drum into the preschool staff, you cannot do harm by using an epipen inappropriately, but you can by not using it when you need to. They are amazing, I've had to use my dd's epipens 3 times this year and they work so quickly, it's really reassuring to know. But it really helps to know all the allergies which we have only recently finally got answers to (DD is now 18 mo) so you will feel better when your DD finally gets all the tests done.

Anaphylaxis campaign is great, as is MN. Real life people are so variable at their understanding and support, even family can take a lot of persuasion. So ask away anything you like and hopefully each day will get easier. It is a hard first few months but it honestly does get easier. You learn to plan everything and take food with you everywhere, that includes social occasions like parties. And if you think it's too risky, just avoid it the situation until feel kore confident, your dd's health is more important than worrying about peoples reactions. Do show people the epipens when explaining things, for some reason that makes people believe you more.

Sending lots of hugs and hoping you are all doing ok. smile

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