Thread: Anaphylactic daughter

Hi all,

This is my first post - and I apologise that it's not the 'usual' introductory one that most people post when they're new to a forum! (but briefly, I'm mum to a 7yo daughter,and a 5yo son).
However, I don't know where to turn, and I'd really appreciate any help or advice you can give me.

In the early hours of monday morning, dd woke up coughing. When I went to her, she was very hoarse and having problems breathing. Her face round her eyes went red and swollen, and she had a red rash all over her forehead. Long and short of it is the ambulance crew said severe allergic reaction. She was stabilised with adrenaline, antihistamines and steriods, and sent home from hospital after a few hours, with the advice to get an epipen! (Which we have done - and have one at home and one at school).
We have an appointment in 3 weeks time at our local hospital for allergy tests, as I have no idea what could have caused this reaction. She'd been to a birthday party on the sunday afternoon, and although she'd eaten things we don't eat at home, she'd not eaten anything that she'd not had before.

I have so many questions, and would really love to find some-one who's been here, and done this who can help.
I'm living in fear and trembling about when/if it's going to happen again; where it could happen etc etc ......... as you can imagine, life is not peaceful at present.

Thank you very much in anticipation.

Highburybelle

Hello and welcome to MO!

I can't give you any advice as I have no experience of allergies. It sounds very scary and I hope you get the answers you desperately need very soon.

Hi Highburybelle

First of all I can totally understand how scared you must be feeling. I have a 7 year old son who was diagnosed with nut allergy when he was 4. He has never to date had to use his epipen, but I live in fear of the day he may suffer anaphylactic shock. My son also has severe raw egg white allergy and once ate some cake mixture from the bowl when i wasnt looking and had a nasty attack, although thankfully piriton sorted it out.

Once your dd has had tests to establish her allergy/allergies you will be able to relax a *bit* as you know what you are looking out for. Anyone can develop an allergy of any severity at any stage of their life, so you may find outthat your daughter has developed an allergy to something she could previously eat. However, the fact you dd had beenin bed some time when she had the reaction would tell me that it was nothing to do with the party she went to as anaphylactic shock would ahve ahappened almost instananeously on coming into contact with the allergen ( I could be wrong but am pretty sure that would be the case) How soon did the attack happen after going to bed? What had she done prior to going to bed?

There is another moderator like myself here who has a DD with severe nut allergy and is highly knowledgable in the area os anaphylactic shock. She should be online tomorrow as onlyhas access to the pc at work. I will email her to let her know about your thread for extra info as well

I am surprised you have to wait 3 weeks for an appointment. Is tehre any way you can call your dr or the hospital and try and get seen sooner as imo your dd suffering a reastion this sever with no iea of the cause would be a good reason to get some answers much sooner.

Have you got piriton? It must be very, very worrying for you when she goes to bed not knowing what caused this reaction. Do the school have staff who are experienced in the use of epipens? Do they know the first signs of reaction to look out for in your dd? You should also have piriton kept at school for administrarion.

I totally know what you are going through and just understand you are not alone and your fears will ease somewhat with answers. Remember, you have the epipens now so if an attack happened again, you have the medicine to administer which buys you time so please try and not worry too much (although I know you will as I know what i was like while in the process of getting ds diagnosed!)

WHat type of pillows and bedding do you have by the way? I ask as I am trying to work out what could have caused this reaction while she had been in bed so so long. Do you have any pets? What was the last thing she ate or drank before going to bed?

No advice but I hope you can be able to find out what caused the reaction.

Hello Highburybelle,

Welcome to MO.

Like Starry – can understand completely where you are coming from and how very very worried you must be about your daughter. Witnessing an anaphylactic reaction is one of the scariest things I have ever experienced.

As Starry has already said – I would go back to your Dr and ask for an immediate referral for your daughter – 3 weeks is a long time to wait when you are not sure what she reacted to in the first place?

In the meantime – ensure that every where your daughter goes – the EpiPen goes with her – sounds stupid – but make sure you know how to administer it properly and show everyone who will have care of your daughter - including school etc.

It is also a good idea to carry anti histamine – so if your dd feels any tingling / itchiness she can take this to relieve the symptoms – but this will not stop an anaphylactic reaction if it is going to happen.

For more advice you could also contact the anaphylaxis campaign – www.anaphylaxis.org.uk

Dear All,

Thanks for your advice and support; it's been a very scary week - and one that I'm glad to reach the end of! Even though I know this won't have gone away, it's slowly getting easier - in the main due to what you've told me!

We now have 5 Epipens, and I have ordered a trainer pen from the maufacturer - we have been 'practising' with ds's Sonic Screwdriver!! Hopefully once we've got the training pen we can all have a go so we know what to do!

School have been great - photos of her in the staff room, the kitchen and KS1 area of the school; Pupils told what symptoms to look out for, and to get a grown up if she displays them; school nurse coming in on wednesday to give training to all staff, but HT & DHT both willing to administer epipen if needed.

I hadn't thought of antihistamines - it makes sense though, as that's what they gave her in hospital - so I'll get some piriton tomorrow (thank you!).

As for what could have caused it, I've been wracking my brains; she woke me at 3:20am - so if it's a food allergy it happened a very long time after she last ate anything. Bath at 6:30pm-ish - new bottle of bubble bath opened (but one we've used before), hair-washing (MY shampoo/conditioner, rather than kids' shampoo, but she's used it before); then bed. Sheets, quilt and pj's were clean on on Friday - washed in persil non-bio (halfway thru' 2nd large box). So I can't see anything that immediately leaps up and down and bites me on the bum there! We have no pets, and due to the cold weather, her bedroom window was closed - so I can't see that she could have been bitten. I am at a total loss!! Which is probably why I'm so scared - lack of control is not something that I handle very well!!

I asked my gp when he did the on-line referral to the allergy clinic why she was classed as 'normal' priority, rather than 'high': his answer? Only 'malignancy' is classed as high priority - even though anaphylaxis can kill a darn sight faster!!

Once again, thank you - it's nice to know I'm not alone! Any more advice or suggestions, please bring'em on!

Highburybelle

The trainer epipens are good. I also practise using proper epipens that are past their use by dates, on oranges. The first time I did this I jabbed myself in the thumb as had the bloody thing round the wrong way - so valuable lesson learnt (and painful as well)

The length of time after she went to bed is quite unusual. Anaphylaxis usually occurs very close to the time of coming into contact with the culprit. I was going to ask about feather duvets, but I assume as she has had no other reaction even of you did have feather she can't be allergic to that. I myself had a very nasty reaction to a feather pillow when i stayed at a friends house a couple of years ago. Went to bed fine and awoke a few hours later with hideously itchy face and neck, and face and eyes swelling up by the second. Luckily I had strong anti histimines on me and took a double dose and went straight to the dr's at 8am. I had no breathing problems though just a chronic urticaria reaction.
Once you have discovered what caused the reaction you will be able to research that and feel more confident about your daughters allergy. You can never have too many epipens imo even of your dr gets a bit irked at prescribing lots (as they tend to have shirt shelf lifes and are seen as some as a waste to have so many!) I have 2 at school, 2 at home and 2 in my bag/car. Write in your diary a couple of weeks before the use by date is up on them and that way you will always have a note of when to get a repeat prescription

Also make sure your daughter is aware of what it feels like or may feel like (as she has onlyhad this one attack) with regrds to the feelings she gets at the start of a reaction ie tingly tongue? Itchy mouth/skin anything like that, so she understand she must tell a grown up straight away and not be worried in case it is a false alarm as no one will be annoyed with her. My son can tell me whenhe is having a mild allergic reasion after eating certain apples for example (usually non organic from school or at certain times of the year when pollens interact with the fruit and cause cross reasions) or eggs that have not been cooked through thoroughly. Also my sons best friends are aware of his allergy and even though they are only 7, one of them alerted him to the fact another child had a peanut butter sandwich at lunch and made sure ds moved away from her while he alerted a dinner lady Nuts are banned in his school but...

Anaphylaxis to kiwi fruit is one of the allergies that can be very mild and almost unnotiable one day and severe to lethel the next by the way. I had a mild sensitivity to kiwi after I had ds1 which has now developed into a serious allergy and i ge a very itchy sore throat if I were to eat one, so i avoid them with ds1 as well as previously he would get a slight rash on his hand where the juice dripped and I don't want to take any risks.

No usefull supportive Ideas from me just a big

Hope it all gets sorted very very soon!

Hi,
I Hope you get to the bottom of this,its so worring! My 11yr old daughter had a nasty reaction to kiwi fruit a few mths ago,she carries an anapen with her just in case. It is extremly worrying but thankfully it is a food that can be avoided.(BUT it is possible for her to react to other fruits also) My GP only let us have 1 pen & wouldnt refer her for tests (as we "should just avoid kiwi"),Im going back to beg/plead/demand a referal.
I saw your thread ,you mentioned your daughter was in bed,check her pillows and duvet dont contain latex because my daughter seemed to be getting a "reaction" to somthing at night (in the day she was fine UNTIlL in bed) then she'd be coughing,sneezing,puffy eyes and face in the morning. My husband susspected it might be an allergic reaction to feather pillows,checked them,no feather content.
A while passed,we discovered that people allergic to kiwi can also be allergic to latex,we then reolised thats what her pillows were made of.Since removing the pillows shes been 100% better!
Good luck with it all.