getting things into perspective

[SmashingNarcissistsMirrors]

as someone who has suffered from allergies all their life (mould, dust, hayfever, animal hair, pollen fruit syndrome and various unidentified) and comes from an allergic family i just wanted to put things into perspective for parents who are worried about their childs allergy.

allergies are at best annoying and are frequently horrible / embarrassing / uncomfortable / debilitating.

however one thing they very rarely are is fatal. especially in children. in a 10 year period only 8 children under 16 died from a food allergy in the uk.

i don't want to underplay the concern but i just hope that people can relax a bit about allergies and the level of risk they present compared to many other things (motorway travel for example).

"Eight children younger than 16 years died from food allergy between 1990 and 2000 in the UK?that is, one death per 16 million children each year.2 If we assume that 5% of children have food allergy, then this is one death per 830 000 children with food allergy each year. Milk caused four of the deaths and no child younger than 13 died from eating peanuts. Two of the children died despite receiving adrenaline before admission to hospital, and a further child, with a mild food reaction, died from an overdose of adrenaline. Similar rates are reported in Sweden, with only six deaths between 1993 and 2003 (T Foucard, personal communication, March 2006).8 w2 No other large epidemiological studies of children exist, so we do not know how incidence varies between countries. A letter reported a higher incidence in Canada?11 deaths between 1986 and 2000 in a child population one fifth that of the UK.9
"

While I do appreciate that you mean to reassure parents of children with allergies, I think many/most of these parents would be aware of these figures already. I've read the same myself, and yes at times it does help me to get things into perspective; statistic-wise, my child is very unlikely to die from a reaction. Having drawn the short straw on a number of statistically-favourable situations in the past however, sometimes to me, statistics are just meaningless numbers.

A few things I have wondered when reading reports of this kind though...

Whether one of the reasons there are so few deaths from anaphylaxis, despite the increased incidence of allergies, is because of the corresponding prevalence of Epipens these days? I note how it was mentioned that 2 children died despite adrenalin being administered, though I guess there's no way of putting a figure on how many it's saved. I also note how it reported a child died from an overdose of adrenalin - it would be interesting to know how much caused the over-dosage, and whether they had a pre-existing condition, as I'd imagine this information without relevant details would put extra fear into parents.

I also wonder what the statistics would be on the incidence of permanent brain injury as a result of hypoxia from ananphylaxis. I don't know if that kind of data is reported in these studies, but I know it does happen.

I'm not trying to be negative, as I know your post is intended to be supportive and reassuring, I'm just new at this, and genuinely curious

Also not trying to be negative and I sympathise with the reassurance motive but I'm tempted to ask whether the extremely low death rate among children under 16 could be due to the vigilance which parents maintain while the child is in their care? (Slightly off topic but there is also an argument that some of the 20-30 asthma deaths in children annually in the UK could in fact be due to anaphylaxis)

While still very low compared to other causes, it does rise for over-16s. Indeed, Anaphylaxis Australia has called for specific action to educate the adolescent/young adult group. I'm not disputing that these figures are low but parents do tend to be aware of them and of comparative statistics such as road deaths. That doesn't remove the anxiety that an event which is statistically of low probability, is still a possibility.

only 1 percent of people who get an anaphylactic reaction will actually die from it.

compare that to the numbers of children who get killed in car crashes - yet parents still allow children to travel on motorway journeys.

i just think it's interesting that there is such a fear of extreme allergic reactions due to possibly a few horror stories in the papers.

i have to admit i'd be far more concerned about a fatal asthma attack than anaphylactic shock.

I agree with Pixie. I am new to allergies and DS only recently got epi-pen. I can't (atm) let go of the fact DS has a chronic and potentionally fatal condition. And I have suffered anything close to what Pixie, her DD and her family have.

Yeah the Stats are great percentage wise. But a friend of mine is one of those statistics - one of the children over 14 who died of peanut allergy and had adrenaline before getting to hospital.

So while the chances are very low - they are still there.

I'm sure anyone whos honest will admit they alow children to cross roads, go on motorways but are also aware of the risks. Thing is the whole population have these risks, only our children have the added risk of allergy.

Sorry I haven't suffered

It's a very different matter your children suffering from allergies though smashing. Do your children suffer from allergies or is it just you?

I would find it much easier to not feel anxious about allergies if it was just me suffering from them.

It's not just fear from a few stories in the media.

Many parents on this forum have children who have suffered extreme and life-threatening allergic reactions.

I for one spend a significant amount of my time worrying about people like you who do not acknowledge the very real threat of death due to allergic reaction faced by my child on a daily basis.

I don't find, Smashing, that anybody here comes under the 'extreme fear' category and find this actually a bit of a straw man. From what I can judge, people on here seem to be coping, getting on with life and not collapsed in a helpless heap of terror. But a diagnosis of potentially life threatening allergy for your child is a serious - life changing - event and parents are rightly anxious and concerned to protect their child's life. Added to that is the stress of maintaining avoidance measures, endless explaining to parents of friends, schools etc. To have to be always aware that, e.g. the food your child might encounter might harm them, or worse, is quite a burden. If people let off steam here or even occasionally seem to you a little overwrought, I find that perfectly understandable

Regarding your point about motor deaths, I think the crucial point is that people feel in control (however deludedly) in the environment of their car. And, as noted before, the whole population (more or less) is exposed to the risk which somehow normalises it. Parents of severely food allergic children can find that there is not much understanding of the condition in the general population - or even in their circle of family and friends and this can cause great worry.

I imagine you've looked at the Anaphylaxis Campaign's website, Smashing? They fully acknowledge the seriousness of severe allergy but their line is that it is manageable for the vast majority of cases. That seems to me to be generally the attitude here too.

Other children being killed on the road doesn't lessen my child's chance of dying from anaphalaxis. I have to worry about anaphalaxis in addition to the mainstream fears. I also have to worry about adults telling him that 'just a little won't hurt', 'mummy won't mind'. Adults generally don't encourage risky behaviour in other settings, " You can play in the traffic, but only 5 mins, ok", "You needn't put on your seatbelt, mummy won't mind".

I worry about 'allergy bullying' when my child starts secondary school. I worry about the social isolation when his friends parents are too scared to invite him over for tea. I worry about the spike in deaths amongst teens and young adults. I worry that his university housemates won't clear up after themselves. I worry that he will get left out when all his friend go to a restaurant that he can't go to. I don't worry all that much about him dying but if he does the staistics are meaningless.

On top of this it is an enormous pita having to check everything all of the time, phone up every party venue, every restaurant we want to go to, read every packet, always carry 'safe' food to swap when he is given something, explain to teachers, explain to parents, explain to wait staff. It never stops.

If every parent with an allergic child just said, fuck it, eat what you like, I'm not doing it anymore then the stats would change. The reason why so few children die is because of the pita checking and helicopter parenting that goes on.

My son isn't going to die from his allergies.

I still would do anything to relieve the constant itch and soreness of his eczema or spare him endless days of stomach cramps. I also want him to develop normally alongside his peers, not be held back by stunted growth and low body weight. I want to spare him the indignity of being unable to control his bowels as he grows older.

It's beyond 'annoying' to see your child's development affected by what they eat. I have no fear he'll die from food allergies as I don't plan to feed him food he cannot digest and shits out in pain on a long term basis but I think you need to understand that allergies vary from person to person. My son suffers a lot of pain if he eats certain things, what mother wouldn't want to avoid this? I knew he wasn't going to actually die in hospital but it broke my heart to see him lying like a little skeleton screwed up in pain from cramps as a tiny baby with skin that bled if I held him naked.

Lastly, you say you'd be more concerned about asthma? As with my son they're inter-related often.

I think you might find, Smashing, that many of the parents of severely allergic children here are also dealing with asthma, and are aware of the implications of these two diagnoses together regarding the raised risk of an acute episode in either condition.

You mention that 'only' one percent of anaphylactic reactions prove fatal. If you are dealing with an acute, life threatening reaction, 1/100 odds begin look a lot less comforting. Regarding the motor deaths, one could argue equally that restricting children's exposure to the risks inherent in motor travel would save many young lives. By the same token, relaxing vigilance where children have life threatening allergies just endangers more children. Because as a society we apparently tolerate avoidable child deaths in one context (car travel), I don't see how it follows that we should be relaxed about a real risk such as potentially life-threatening allergy. Surely preventing avoidable child deaths is a good thing?

Smashing - I'm struggling to see how you feel your contribution helps here and why you added it.

I'm sure you're trying to be helpful but most mums on this forum have severely allergic children. Not ones that get the odd rash.

We're all too close to being parents of the stats.

The under 16 stats are low because we can control our children's environment while they are young. And, not surprisingly, the stats can't be taken as given while there remains a high concern that many allergic reaction deaths are still registered as asthma deaths. I'm sure you must be aware of how the stats increase over the age of 16. So, smashing, if we all seem a bit tense, we probably have good reason.

This forum is great as mums who regularly come close to losing our children due to allergic reactions we can share our concerns, moments of terrible sadness, confusion and occassional joy.

Excellently put Topiarygirl.

thank you Mumbar - and after venting and 1/2 bottle of red wine I'm feeling a whole lot better!!! Despite having to chase around half of bucks county trying to get my sons epi -pen kit of the scouting association!!! (sorry long story - v. bad night!)

compare that to the numbers of children who get killed in car crashes - yet parents still allow children to travel on motorway journeys.

yes and I'm betting that when you travel on a motorway you don't take the view 'oh well the chance of a fatal accident is pretty low' (which it is if you look at eg deaths per journeys/miles travelled) 'I'll just not give a fuck and drive however the hell I like' because you know that if you did there's a much greater, realistic chance you might die.

It's exactly the same with an allergy that carries the risk of anaphylaxis. Every time my son goes to eat he might die...just might, it's not hugely likely but only because of the vigilance and education etc. If that is motivated by a very real fear that our child could drop dead then it's surely not that surprising/unreasonable is it?

mishtabel I think you're being very generous in your guess as to the OPs motives by suggesting they're trying to reassure us. I've read it as someone who (as far as I can work out) doesnt deal with anaphylaxis basically telling me to lighten up and get a grip.

The fact that the OP says 'allergies are at best annoying' is astonishing. I don't think 'annoyance' would even make the top 100 emotions I'd experience if my DS had a severe reaction and if he actually died I can't imagine feeling anything other than crushing grief.

Topiarygal well said! Hope you've managed to sort out the Scouts and the epi-pens!

"...only 1 percent of people who get an anaphylactic reaction will actually die from it.

compare that to the numbers of children who get killed in car crashes - yet parents still allow children to travel on motorway journeys..."

Succumbing to my pedantic urges, I looked at latest US data (2009) on percentages of vehicle traffic accidents which are fatal...and it turns out to be 1.03%. It would appear then that the relative risk for a vehicle accident being fatal is pretty much the same as for an anaphylactic episode ending fatally, and not much less, as the OP seems to suggest. Absolute numbers are of course higher as the risks of vehicle travel apply to the whole population (more or less).

in case above is unclear, I meant to say :

"It would appear then that the relative risk for an anaphylactic episode being fatal is pretty much the same as for a vehicle accident ending fatally, and not much less, as the OP seems to suggest"

smashing, I don't - currently - worry about my DD's allergy being fatal. She has a medical condition that is more than likely going to be the cause of her death so from that point of view I can 'put things into perspective'

however, at the moment from a day to day perspective her allergy (she's allergic to CMP on contact)causes me far more concern. She's only 3 (4 at the end of the month) and is just setting out into the big wide world - a world where I am not going to have control over everything she puts inside her mouth.

I have already experienced occasions at her preschool where they have given her things to bring home that she cannot possibly eat and it does worry me what she will be exposed to at school in September.

I think we all know how we feel about the social aspect of having an allergy so I won't go into it but safe to say I hate the fact that she cannot join in with the crowd at most opportunities.

So as others have said I am in two minds as to whether you originally intended to encourage us or just buck our ideas up, I hope it was the former

smashing, I'm so glad that the people on this thread have given you the benefit of the doubt. I do hope that you meant to be encouraging rather than dismissive, but I must admit that my first reaction when I read this thread was to give you the - and I am genuinely sorry if I am doing you an injustice...

We all worry constantly that our children will be the (admittedly rare) ones who die from anaphylactic shock. Living with allergies is hard and we often struggle to deal with people who try to belittle our concerns. Sometimes it is members of our own families who tell us that "a little bit won't hurt him" and other such rubbish. Even when we can keep our children physically safe, that is often at the cost of excluding them from activities which are normal for children of their age - and then we worry that we are causing them emotional damage by distancing them from their peer group...

We read and contribute to these threads because we are (mostly) in the same boat and it helps to share experiences and information. I have learned such a lot from the mumsnet allergies pages.

Thank you for reminding us that so few children die from their allergies... but as other on this thread have already said, that is largely because we are so "paranoid" about our children's safety.

in 'benefit of the doubt' vein, perhaps the fact that the general public tends to overestimate the true prevelance of food allergy confuses people into thinking that real, diagnosed and carefully confirmed food allergy is not that big a deal for the families involved.

Still indulging my inborn pedantry, I had a look at RoSPA figures for UK road accidents, 2009. They say there were 222,146 accidents recorded as causing personal injury - the total of all road accidents is higher and various sources give it as 240000-270000. However I take the smaller figure. According to them, there were 2222 fatalities due to road accidents in 2009, which comes to 1.0002%. However, 500 of those (according to ONS) were pedestrians, so the figure for car passengers killed is 1722, or 0.755%. Which is actually lower than the OP's 1% fatality figure for anaphylactic reactions.