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Stop calling me neurotic

Despite the number of children you encounter with intolerances and allergies, in fact only 4% of children have a proper, medical food allergy.  In general these are the type of allergy that requires swift medical intervention to keep them breathing and living.  We have one of those – if Littler has anything with cows’ milk protein in (yes its more complicated than just dairy) her lips turn blue and she struggles to breathe.  Its not pretty to watch although we have only had a couple of incidents to date.  What is worse is the screaming and discomfort as whatever it was that she shouldn’t have eaten works its way through her system and the awful, bleeding, blistered rash on her bottom when it comes out the other end.

It is not a minor thing.  It’s something we tried really hard to not have to admit that she had.  It’s something that we have all our fingers and toes crossed that she will grow out of.

But we regularly encounter eye rolling when we casually mention she has an allergy because everyone knows a child who can’t have dairy or eggs, or grapes and for whom it is not a big deal..  Low points have been her getting her face wiped with a cloth that had just wiped up someone else’s yoghurt and her managing to sneak a chocolate before her carer noticed.  And then the fun begins, or rather we have three days of fun where she pays for that second of someone not watching her like a hawk.
Parents of children with allergies regularly hear that we are neurotic, that we are using the allergy as displacement for the guilt we feel from working and not being with them all the time, that the allergy is something we can hold onto when actually our child is just badly behaved/difficult/thick.  We’re accused of being hyper-anxious, of not getting it in proportion and trying to make ourselves more interesting – sort of like Muchausens by proxy I imagine.

And if it was any of those things then I’d be happy to raise my hand as guilty as charged.

But for us it isn’t.

Every parent who sends their little darling to a party with a long list of what they can’t eat makes my life harder.  Every parent that confuses intolerance with allergy makes my life harder.  Every single time that someone does insist that their child will only eat grapes that have been washed in bottled water, my life is made immeasurably harder.
And yes, all those things happen.  But for us, we keep on quietly trying to not make a fuss (we don’t want to be labelled as the Difficult Parents with a Child With Allergies) and have to leap in when we go to the park and someone’s toddler upends a bag of cheesy crisps.  And every time I read an article like this I want to throw a tantrum because I am not a Difficult Parent with a Child With Allergies.  I go out of my way to not make it an issue for anyone else.

Because yes, whilst it is our problem and our child, it doesn’t seem fair that other people make our life harder and that people just do not understand.  And if you are living in the 4% where allergies are real and nasty its more than a little irritating to keep being told how simple and commonplace these things are when they absolutely are not.

I suppose that what I really need to do is to make everyone who rolls their eyes at me sit down and get ticked off by our consultant – Mr Muddling came along to a meeting with him somewhat relaxed about the seriousness of it all and came out of it rather more concerned.   But then again, I’m not sure I can afford to have our consultant sat in my handbag waiting for someone to tell me to lighten up…

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7 comments to Stop calling me neurotic

  • Sally Huggett

    I know exactly what you mean. I have exactly the same problem with Daniel. He does not eat any food at all and survives on milk drinks prescribed by the Dietician. Every time we go somewhere we get ‘the look’ when we say he doesn’t eat food due to all the ‘picky eaters’ out there who refuse to eat their greens for example or refuse to eat proper cooked dinners. But Daniel doesn’t refuse. He has Sensory Processing Disorder which is very real and very hard. He cannot eat food. He cannot bear the texture of food near his mouth. I don’t know if we will ever help him out of this. It is a long hard slog. And it is not helped by people who pre judge and think you are a bad parent. So I totally understand where you are coming from on this and I have empathy for you. Chin up – you are a wonderful mum xx

  • Allergies must be very difficult to live with, especially as kids get older and you have to trust them not only to take responsibility themselves but also to police people who they have been told are responsible adults. We are very lucky not to have any allergies in our household but a friend of my stepdaughter has a serious nut allergy and I appreciate the issues. It must be beyond frustrating to see otherwise sensible adults ignore something that is a matter of life and death for your child.

  • Karen

    Yes, having a child with cow’s milk protein allergy is tough. My son initially had CMP anaphylaxis, now downgraded to CMP allergy. Have faith. Many of these children improve greatly with age.

    We also deal with delayed allergic reactions/intolerances to many foods and sensory processing disorder. Of these, I have found the anaphylaxis/true allergy the easiest to deal with. It is easily diagnosed and doctors believe in it. Unravelling more subtle delayed reactions and intolerances and dealing with behavioural issues is the bane of my existence.

    I read the article you linked to. Don’t take it to heart. There are silly, judgemental stories on just about any topic. The world needs more compassion and less judgement.

  • Oh, I feel for you, thankfully it is something I have never had to deal with, but I cant imagine how difficult or worrying that must be especially when they go to a party or are in an environment where they may come into contact with those foods. And I imagine, it will probably only get worse as they are more out of sight as she gets older in school etc. I hate that people can be so judgemental, mostly when it is something they dont really know anything about or have never experienced.

  • Redbedhead

    God yes, I am so fed up with people saying ‘oh but a little bit will be fine’. Erm, no, it won’t. It is a serious allergy, risking anaphylaxis if she eats it and an immediate skin reaction if it touches her skin or something touches her skin that has touched dairy. I am not being over the top when I insist on disposable wipes being used to wipe her face. I am not being an over protective mother when I jump in to stop someone giving her a wotsit.

    It is so frustrating and I am sure it will only get worse as she is more able to walk around and grab other children’s food.

  • The Mad House

    This must be terrifying, it seems that there is a trend to have food allergies, when really they are just intolerances

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