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Supporting child after anaphylaxis
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Yellow85 · 28/11/2021 20:50

Hi, just wondering if anyone has any experience of supporting young children after anaphylaxis? DS has a good allergy, only recently discovered and whilst the reaction was moderate as he didn’t ingest the food, he’s told me that he thought he was going to die.

I’ve noticed a change in his behaviour since then (he also had covid at the same time). School has noticed a change in his concentration and he’s having nightmares and much more emotional.

Does anyone have any advice? No allergy clinic appointment yet. It’s taking it’s time, so no ‘professional’ support as yet.

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Yellow85 · 29/11/2021 11:29

Bump

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KeyboardWorriers · 29/11/2021 11:32

How about a psychologist or play therapist? My son really benefitted from this

Or when he was younger he used to play doctors with the training EpiPen and that informal working out the events through play really helped him

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PanicBuyingSprouts · 29/11/2021 20:45

Your poor DS! Thanks

Do you know who you've been referred to? I'd be tempted to phone their Secretary and make sure they know how it's affecting your DS and that you're keen to take a last minute appointment, if you can.

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corlan · 29/11/2021 20:59

When my DD first had anaphylaxis, I attended a one day course run by //www.anaphylaxis.org.uk . There were a lot of parents on the course that were experienced dealing with anaphylaxis and I found it so useful - really helped calm a lot of my fears. This was nearly 10 years ago, so I don't know what courses they're running now, but it's worth having a look.

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Yellow85 · 29/11/2021 21:06

Thanks everyone, this is all really useful. I’m just at an absolute loss. We had another rough night of tears and he’s finally just gone down. He just says that it’s changed him, but can’t articulate what he means by that. He’s only 7, so it was a lot to compute at the one time. Most of his nightmares have been associated with death in some way too.

I don’t actually know who we’ve been referred to or even how to find that out. I know the health board, that’s about it. I assume it’s the local children’s hospital.

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Yellow85 · 29/11/2021 21:07

@PanicBuyingSprouts

Your poor DS! Thanks

Do you know who you've been referred to? I'd be tempted to phone their Secretary and make sure they know how it's affecting your DS and that you're keen to take a last minute appointment, if you can.

Thanks. I do think he would benefit from someone actually explaining it, letting him/us know how severe it is and hopefully reinforce that he is not going to die. He’s very keen to learn and a bit like me that he seems to relax when he has facts/info.
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Terminallysleepdeprived · 29/11/2021 21:12

Hi @Yellow85 I suffer a food based allergy as does dd, she is 8. I understand both your fears and your sons. I was in my 20's when mine appeared. I was a fully trained first aider and trained to support paramedics but it scared the living daylights out of me when it happened to me and again 20 years later when dd had it in McDonald's of all places.

My best advice is to talk to your ds. Explain what has happened and help him understand the signs and how to treat it.

Has he been given an epipen? If you contact your local St John ambulance they may offer support and training for both you and ds in how to manage his condition.

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Yellow85 · 29/11/2021 21:17

@Terminallysleepdeprived thank you. I’m in Scotland so no St Johns I’m afraid. I think we just feel in limbo as he was obviously rushed to hospital when it happened. Discharged and now nothing, we just have so many questions. We have no idea how severe his allergy is or even which nuts - it was a cashew this time round.

No epipen until after allergy clinic/tests. Which we’ve heard nothing from. We were given 1 bottle of antihistamine, so I proceeded to buy bottles in bulks from multiple supermarkets to make sure the family, school, clubs etc all had some.

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Terminallysleepdeprived · 29/11/2021 21:36

Feel free to dm me. Dd has hyperactive Immune response so I literally live with this fear every second of every day as she can literally go into anaphylaxis of she gets too hot.

Cashews are a tree nut so things like almonds, Brazil nuts etc are probably best avoided until you have seen the allergy clinic. I would probably avoid peanuts too just to be safe.

Anaphylaxis is terrifying but the absolute must os that if he has another reaction you need to stay calm for his sake. And I know exactly how hard that is.

He needs to understand what happened to him and that it will probably happen again do he needs to know what to do. I would get him an alert bracelet to wear (Google you can get can get rubber fashion type ones).

The most important think is let me be scared, tell him it is normal, that it is OK. That you were scared. He needs to know that it is a valid reaction to what he went through.

When he is ready talk about how you make sure it doesn't happen again. Get him involved with in searching recipes, the contents of your kitchen to learn how to check food labels.

And be kind to yourself. Get support for you too

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PanicBuyingSprouts · 29/11/2021 21:38

Could you ask your GP's practice if they know who you've been referred to @Yellow85?

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Valhalla17 · 29/11/2021 21:45

Your ds needs an epipen. Following anaphylaxis, especially if the throat swelled they give it to you right away. In fact you need two. Don't wait for the allergy diagnosis.

I'm so sorry for your ds. I've been there myself, nearly died and was fearful for a long time. The sense of doom when you're in the midst of it is just undescribable...

Therapy will definitely help, CBT. I also suggest you talk through exactly what the plan is, should it happen again etc., so that he feels like he has a bit of control over how he is going to react and manage it.

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Valhalla17 · 29/11/2021 21:46

Indescribable*

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SparklingLime · 29/11/2021 21:52

I second Anaphylaxis UK. They also have a helpline. www.anaphylaxis.org.uk/living-with-anaphylaxis/the-nhs/

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Yellow85 · 30/11/2021 12:46

Thanks everyone! I’ve had a bit of luck, apparently the NHS wait for an initial appointment is about 5/6 months right now and that’s even before that tests are scheduled. However my very understanding employer has allowed me to make a change to my health insurance so we can see someone sooner and integrate some mental health support too in one plan.

Hopefully be able to settle him with some information.

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ChateauMargaux · 30/11/2021 12:52

I know people know here don't agree.. so take this with the intention with which it is delivered.. . homeopathy and Bach flowers can really help with the shock and emotional impacts associated with physical issues.. PM me if you wish to discuss more. My son has peanut and sesame allergies and other non food reactions. We use conventional medication but also use homeopathy and naturopath to support him. It can take him a while to recover from a reaction.

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Yellow85 · 30/11/2021 13:55

@ChateauMargaux I haven’t heard of Bach Flowers nor am I typically the homeopathic type, but I mean a nice scented oil bath is relaxing for most, so it make sense. I’ll have a look at what I can do before bedtime to help as that’s when his wee head seem to run riot.

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ChateauMargaux · 30/11/2021 16:42

A warm bath would also help... and perhaps some relaxing music.. curiousmindmagazine.com/song-that-reduces-anxiety/amp/?fbclid=IwAR1dyEPKjZ5uSqmHnQB4lnPSgvEiVbzPWBQ3Tj2OF4v682GfBeogK_oRMx0

Also, reminding him that he was OK despite the reaction and that you now know to avoid nuts for now until you get more information and that you have antihistamine at hand.

People and especially children, use that going to bed time, to process their fears. Maybe working out what works for him in terms of talking about it, writing it down, reminding him that the risks are still very low.

Repeat that, yes, he has to be careful around nuts, the reaction this time was scary but it was OK and yes, there is a lot of fear around allergies and without question it is important that we are careful but the risk of death is very very low.

Not for him to read, but for you... www.businessinsider.com/accidental-death-more-likely-than-allergy-death-2014-1?IR=T.

This is also worth reading. adc.bmj.com/content/86/4/236

In the 10 years covered by this report, 8 children died.

You might not want to go into too many details without giving him other things to worry about but the death rate in children from asthma is 17 per year.

My son has a narrative that he repeats and it sometimes comes out when I am not expecting it. He says what happened, that he has an epipen but he has never had to use it, that when he first had his reaction he vomited but he was OK. He says of course I won't eat peanuts and we can never tell what might happen but that it is unlikely that he will die. It is like an affirmation for him and it calms him.

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PanicBuyingSprouts · 30/11/2021 19:43

Thanks everyone! I’ve had a bit of luck, apparently the NHS wait for an initial appointment is about 5/6 months right now and that’s even before that tests are scheduled. However my very understanding employer has allowed me to make a change to my health insurance so we can see someone sooner and integrate some mental health support too in one plan.

Hopefully be able to settle him with some information

Fantastic news!

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Gigi26 · 09/12/2021 21:15

Hi, I'm so sorry to hear all of this and what it's doing to his mental health.

If you're into books, The Wheat Allergy Handbook has a full section on mental health. I know you said it was a reaction to cashew but this book is by far the best one I've read so far on allergies in general. And the chapters on anxiety might be just what you need? I got mine from Amazon (I also got the dairy handbook...looks like it's a series) as i wanted a physical copy to refer to but maybe you can order it from your local library?

My DD is also 7. She has had multiple food allergies (including tree nuts, wheat, dairy, eggs....the list is long) since she was a baby, as well as going into anaphylaxis if she overheats (@terminallysleepdeprived we're in the same boat!). We have seen over 20 anaphylactic reactions, not because I'm careless but because there are so many allergens and that's how you find out... horrible but true. Having said that, apparently people who have had a reaction actually have a better quality of life than allergic people who haven't as they know what to expect rather than living in fear.

Anaphylaxis is terrifying - always - especially at an age when your son is becoming more aware of death. Plus with the pandemic raging, there's an atmosphere of fear already....and you said he had COVID. It's a lot to handle.

Maybe this book will help. Plus reassurance from upcoming doctors appointments.

In the meantime, get an EpiPen + training on how and when to use it. Your GP should not be leaving you without one - I'm shocked the hospital didn't give you two on discharge.

Do keep us updated and ask here whenever you have questions.

Good luck!!

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Pastryapronsucks · 01/06/2022 20:19

My son was diagnosed with tree nut allergy last year, he was 8. He was very scared at the time, also by the resultant blood tests and prick tests. We noticed he was a quite and withdrawn afterwards.

We have tried to be very open and matter of fact. Once he got his allergy plan we went through it regularly and he demonstrated ith his practice epipen to everyone and I mean everyone. His school got involved and he did a demonstration to his class. He practiced what to say/tell any one and how to look for allergens on food labels we now get him to check in the supermarket. I think this has given him confidence and now he is now quite relaxed.

Hope you lad comes to terms with it soon. It's a big thing for you all.

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