Third reaction at nursery, now even more worried

[garliclover]

So DS (15 mo) started nursery 5 weeks ago, two afternoons a week. All the staff have been informed about his allergies and have been very understanding and communicative. This hasn't surprised me, as it is thought to be the best nursery in the county and the staff are amazing.

However, they've already had to give him piriton three times because he's reacted with hives, wheezing and sneezing to 'mystery' things. My suspicion is that other children have spilt milk and he's put his hand in it, rubbed his eyes, etc. Or he may have picked up some breadcrumbs from the table (allergic to wheat too).

I wasn't that worried until this third time, when he was really out of sorts for the rest of the evening. Also, our paediatrician has just prescribed epipens for him because she thinks that his recently developed asthma puts him at risk of a severe reaction.

So my question (finally!) is: could repeated exposure to an allergen, even when the reaction is not anaphylactic, put him even more at risk of a severe reaction eventually? In that case, is it sensible of me to consider taking him out of nursery altogether and keeping him at the childminder's (he's already there 3 days a week and has never had any sort of reaction there but for various reasons including financial we want to eventually switch completely to nursery).

Oh, the worries seem endless! Thanks for reading this if you've got to the end!

[ChocaMum]

You poor thing garlic, the worrying never stops. My DD is at nursery too and she's 18 mo. At feeding times they sit her on a little separate table near the other children but not next to them, and one of the staff always sit with her. This way she cannot get to any spillages or crumbs. They also wash the tables, all of the little ones hands and face, and clean the floor before they all leave the tables so the little ones can't spread food everywhere. Maybe it's worth discussing these approaches with the nursery.

Repeated exposure is not meant to make the risk of having a secure reaction any higher, in fact it's the opposite - the longer the time period between reactions, the more likely you are to have a severe reaction. I agree if your DS has signs of asthma he should definitely have epipens, asthma means your airways over react to things like dust etc so the airway then also has a tendency to over react during an allergic reaction.

Also maybe having epipens will make the nursery become even stricter with how they manage your DS' allergies. He definitely shouldn't be having such frequent reactions. Like you said yourself, he hasn't had this problem atvthe childminder so he shouldn't have to be suffering at nursery either. Good luck.

[garliclover]

Choca, thanks so much for your reply. I will definitely discuss those approaches, and there's a parents' consultation session at the end of the month, so will be going along to that too.

Now I've got the epipens, though, I'm worried about whether I (and the nursery staff/childminder) will miss the signs of an anaphylactic reaction. All his allergies are Ige mediated, and he's reacted to allergens with vomiting, wheezing and rashes. But he has also reacted with laboured breathing (after eating lentils: a paramedic was sent by NHS direct and she called an ambulance. In A&E they thought he had a chest infection & gave him triple the maximum dose of antibiotics by mistake! It was only later, when he reacted again to lentils, that we realised it had actually been an allergic reaction -- the absence of vomiting and rash made us think at the time that it couldn't be).

Sorry, am saying all this to you because you posted a very informative message on poppycat's thread and I started to wonder whether we should use an epipen the next time he reacts with laboured breathing (and without rash or vomiting), or whether there will be other signs too. It seems that we've just been lucky so far, despite our complete ignorance of the subject!

Don't worry about replying to this post. Am just rambling, really...

[ChocaMum]

Hi garlic, please feel free to ask away, anything I can help with I am more than happy to try. It's such a huge learning curve for all of us, especially when battling with everyday people as well as health professionals.

Well done for getting through my posts on poppycats thread! Like I said in her thread though I don't get the chance to come on MN everyday (because I spend hours here when I am on!) so please feel free to PM me if I'm not replying because that comes straight to my emails.

I ended up training the nursery staff about how to use the epipen, even though they had been trained, because like you I was worried they wouldn't recognise the signs. It took me long enough so I can't blame them. It was actually after a workshop by anaphylaxis campaign, and looking back at an episode where DD ended up in A&E and discussing this with the group that It became clear to me when to use the epipens.

Basically the main thing to remember is you cannot do harm by using an epipen, the adrenaline is at a dose that will not cause any harm when used inappropriately and it is very short acting so it has no long term effects (which is why you need an antihistamine and/or steroids to treat the overal reaction.) So if in doubt use an epipen, and I've really drummed that into the nursery staff too. The earlier you use it the more likely it is to be effective so use it before you even call an ambulance.

Any change in breathing including sudden voice change/change in the sound of their cry, sudden persistent cough/choking, difficulty or struggling with breathing, wheeze/high pitched noise when breathing, any sign of swelling of lip or tongue, these are all are signs of an anaphylactic reaction, even when not obviously triggered by food/eating. Older children will complain of an odd feeling in their throat/itching/lump in throat but with toddlers we were told they sometime start pulling or scratching their ear really hard because that's the closest they can get to that part of the throat. I know it sounds strange but I use to get an itchy/feeling of lump in my throat as a child whenever I had white fish and it use to make me want to scratch/pull me ears too because it's so uncomfortable. Obviously if your DS suddenly becomes drowsy or not right in any way (and you know best when it comes to this, you just know when your own dc is not right) that is also a sign of an anaphylactic reaction because it causes the blood pressure to suddenly drop and makes you feel very unwell.

I also use my DD's antihistamine (cetirizine) all the time, if anything seems not quite right then me or DH just give it to her. Antihistamines are incredibly safe ao it really doesn't matter if your DS even has it everyday. Cetirizine is better than piriton because it has a much longer action (24 hrs compared to 8 hrs for piriton) and although our GP is reluctant to prescribe this despite letters from the consultant, I just buy it over the counter for DD.

Also if you suspect an anaphylactic reaction and have used an epipen it is really important to lay your DS flat and raise his leg. The way I have managed this with DD is not to lay her on the floor because she's screaming or really upset after being jabbed with an epipen, but to lay her flat in my arms and keep her legs raised by holdiing one arm against her knees/thighs. This helps to bring the blood pressure back to normal and just this simple action has been proven to save lives in people having anaphylactic reactions.

If you can do the online allergywise workshop on anaphylaxis campaign, it really helps to show that you should use the epipen in all sorts of situations. They send out plastic pratice epipens when you sign up to the online course, although whe using the resl thing you have to use a bit more force than on the trainer pens. Also if you can go to one of their support groups they are so useful I'm going to one in October in covent garden, and there's another in November in heathrow.

I hope this is helpful and please ask anything and I will definitely try to be of help. I hope things go better at your nursery.

[youarekidding]

Nothing to add but totally second everything chocmum said.

I hope you get it sorted soon.

[ChocaMum]

I forgot to say that the lack of the signs you are use to seeing is not an indication that it's not an allergic reaction. I think babybarrister said on another friend after everyone's comments on how their dc's allergic reactions eemed to keep changing, is that allergic reactions show no patterns and are not predictable, how true. So don't look for the signs that you have already seen to confirm anything. And a paramedic or other health professional saying it can't be an allergic reaction is also not reliable unfortunately, allergy training in the health profession is awful as I only know too well myself. I guess it's a combination of the fact that it has not been well known for a along time, and research into it is ongoing and showing new information everyday. We had actually been seeing allergy specialists at a leading allergy centre for 9 months before I ended up demanding a new referral to a different allergy consultant, and only then have we been taken seriously and started getting to the bottom of all of DD's allergies. Only you know best, so always go with your gut instinct if you feel something's not right.

[youarekidding]

Totally agree about the changes in reactions and the thinking it may not be.

Whole back story to DS but even after severe reaction and being given epi-pens a big part of me thought it couldn't be / questioned if it was allergy as DS IgE normal and negative RASTS to things he probably had reacted too.

Have just discovered though the other count - allergic disease marker is always raised (3 different tests at different times of year). It's put down to hayfever (despite at time of tests it was out of season and he was displaying no symptoms), So there can be allergic response (even minimal) when it's not being displayed and therefore any symptoms displayed are very likely to be allergic response.

I've been told to follow these 2 actions. Hives/rash/ redness of face, itchy eyes give AH immediatly as it won't harm. As before but with swelling of lips/throat and breathing alterred in any way AH and prepare to use epi-pen. I have also been advised even for swelling if epi-pen doesn't need using to head straight to A&E as DS has had delayed reactions before. EG hives and lip swelling and then 6 hours later respiritory distress reaction.

You know your child - don't let anyone else dictate to you. It's a shame but I, like others have learnt to fight.

[ChocaMum]

I completely agree with youarekidding, be aware of delayed reactions which I have seen twice with DD. I've told the nursery if they have to use antihistamine for any mild reactions to call me immediately and I would monitor or take her to A&E.

Generally rashes or abdominal symptoms like tummy ache, vomiting, diarrhoea will respond to antihistamines but it doesn't mean that things can't change. Delayed reactions tend to peak at 6 hrs and 24 hrs post 1st reaction but can happen 48 hrs or more after the 1st one.

Whenever DD has had a reaction I end up having her sleep in our bed so if anything happens overnight I'm right next to her. And I still use her sound and movement monitor in case her first reaction is overnight and she does stop breathing when we are not aware. Maybe I'm a bit too paranoid but it helps me cope with it all. I guess she was so little when she had her first anaphylactic reaction that I can never forget how awful that was, like for all of you I'm sure. It makes a huge difference to find some mums who understand though. :)

[garliclover]

Thank you so much, ChocaMum and youarekidding -- you've both reassured me and alerted me to things I ought to think about more seriously. I think I'll get one of those monitors, because I keep on checking at night whether DS is all right, worrying whether he'll have a delayed reaction. He's being exposed to so much more stuff now that he's at nursery and interacting more with other children.

I can't tell you how helpful your posts are.

By the way, I've signed up for the support group on 11 October in Covent Garden. Perhaps I'll see you there!

[ChocaMum]

Hi garliclover,

That's so sweet of you to say thank you (I'm on my phone and I haven't worked out how to access pm on here!)

I'm really glad I've been of some help. It's such a rollercoaster being a mum of a dc with allergies, especially when they're still so little. It's only recently I've felt able to post on MN because I've felt so inexperienced before, but everyone is great on here luckily. And even with my experience in hospitals and seeing such awful things, I've still felt completely frozen with panic when it comes to my own baby. So I'm really glad to hear I've been able to help you a little bit at least in this tough journey.

We use the angelcare sound and movement monitor, as well as the summer infant zoom digital video monitor! I know it's a bit OTT but she has had a few occasions where she just sounds like she's coughing at night but when I've looked on the video I can see her being sick. And she can cry for so many reasons, normally she just settles herself, so it's so much easier being able to check on the monitor before I walk in. We use to just have the sound and movement one before dd's first anaphylactic reaction, so I don't know if angelcare or somebody else just does a movement one if you already have another monitor.

I'm still waiting to hear back from gill elliot to see if we have a place, I know it's meant to be for parents of 3-11 yr olds so I hope we get a place? Have you heard back? It would be great to actually meet some MN mums!

I hope the meeting with the nursery goes well at the end of the month. Maybe see you soon!

[ChocaMum]

Ooh just got an email back to say we have a place, yeah! The last one I went to was so useful, I got more practical information from the one workshop than from all the medical appointments we have been to.

Anyway in case we do see each other I am the short Asian one with the big bump! And my real name is Shara.

[garliclover]

Oh, you know what, I think I got on the wrong one! I saw that the workshops were for parents of over 3s, so I looked on the support group page which doesn't specify ages. So am going to one of those instead, on the 11th (I think the workshop is on the 16th?). How silly of me.

Right, going to look for angelcare stuff now.

[ChocaMum]

The one I'm going to says 11th Oct too, at seven dials club in covent garden. So I thing it's the same one. But i think you're right, it might not be a workshop. I got a flyer through from anaphylaxis campaign and it says 'food industry questions answered' but it says it's also an opportunity to meet other parents too because it's an normal environment in a private room in a pub. I should have a look at their website though to check what I had thought I'd book!

[ChocaMum]

I've just emailed poor Gill again to work out what I had put our names down for and which one would be more useful for us. Maybe both!

[garliclover]

I'm not sure whether Gill would let me go to the workshop on the 16th as DS is only 15 months, but I'm really looking forward to the one on the 11th and to meeting you! I'll look out for you and your bump (congratulations!) and will prob be wearing brown boots and brown handbag with jeans (one of only two current outfits!). My name is Tess, by the way.

[ChocaMum]

My DD is 19 mo so we don't exactly qualify either. I'm not sure what the difference between a workshop and a support group is anyway so we will probably just go to this event and see what happens.

Your wardrobe sounds as varied as mine!!! For me it's anything stretchy at the moment, I'm sure I wasn't this big with DD! Oh well. See you there! :)