Parents need support, too… so here it is

When your child is diagnosed with a string of severe food allergies, it comes as a proper thwack in the guts.

I remember leaving our first paediatric allergy appointment, where skin prick tests showed Sidney was allergic to a catalogue of stuff, including the dreaded peanut, and crying in the car on the way home – well, until my crying set Sid off and I pulled myself together sharpish.

Of course there are far worse things that can happen but knowing that, and appreciating it, doesn’t mitigate the shock. You’re sent reeling: all those half-dreamt notions of taking your toddler to buy an ice-cream in the park, cooking up your favourite childhood treats, skipping round some halcyon village green fete (because we have a lot of those in Hackney) and buying freshly iced fairycakes for an impromptu summer picnic.

Then you start panicking about the next reaction: will it be anaphylaxis? Will you be with him? Will the EpiPen be enough? And schools: how can he possibly ever go to school without you to wipe down all the surfaces and ramraid every other child’s lunchbox for illicit peanut butter? And parties. And days out to cafes. And holidays. And what about this new thing called allergy bullying I’ve just been reading about? And what the hell do you do when every label on everything in the supermarket seems to contain that damn trace of nuts?

...but they didn't warn us about the rednecks....

All of the above are reasons I decided to start this blog. When I looked, in desperation and panic, for something, somewhere, to tell me how to cope, what to buy, where to go, I found that, while the likes of Allergy UK and Anaphylaxis Campaign do very good and important jobs, a lot of the info is incredibly doom-laden. Pics of kids with horribly swollen faces; tales of horrendous reactions in farflung places, miles from the nearest hospital; posters warning of the dangers of travelling anywhere without your EpiPen.

But there seemed to me very few places parents could go to find and share info and advice on everything from allergy-friendly places to eat, the foods and products they buy, recipes they rely on and tactics they adopt for kids’ parties, schools and the like.

Plus, as they say, strength is in numbers. There’s a whole host of misinformation and misunderstanding about allergy swilling about, and an appalling lack of basic training on cross-contamination and allergy-friendly foods within the catering industry, not to mention the shockingly unhelpful labelling of prepacked goods. So a group of parents with the same agenda can perhaps help to persuade a local supermarket to stock a better ‘free from’ range, or a local cafe to improve its allergy-friendly provision, or a nursery to get its allergy policy together, far better than a lone mother or father on a mission might.

All of that is why support for (and between) parents of kids with food allergy is vital. And it’s why I’m so pleased that our hospital, St Mary’s in Paddington, is to become the first hospital allergy clinic in the country to set up a parent support group.

Backed by a £30,000 grant from the Imperial College Healthcare Charity, the first meeting will be held in Ealing on Saturday 21 April, with consultant paediatric allergist Dr Robert Boyle and Katherine Phillips from the allergy team to host and answer any questions. See here for full details.

Says Dr Boyle: “We’re delighted to be able to set up such a useful resource for parents of children with food allergy.

“Parents of food allergic children can have greater knowledge about some things – such as local places to eat or where to buy ‘free from’ food – than healthcare professionals and may be best placed to advise and inform other parents. We are pleased to be able to put them in touch with each other.”

The plan is to roll the scheme out across London, if all goes well – and I am very happy to say I will be helping to launch the second support group meeting, in the Stoke Newington area, this summer.

For more info check back here, follow me on @foodallergyuk or see the St Mary’s support group site at www.allergysupportgroup.org.uk. If you wish to attend one of the support groups or to host one near your home email info@allergysupportgroup.org.uk.

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8 thoughts on “Parents need support, too… so here it is

  1. I so agree for the need for support! I live in the US and recently took over a local support group. Thankfully, the Food Allergy and Anaphylaxis Network works with many local support groups to start and encourage them. So many newly diagnosed parents of food allergic children need to know they’re not alone! I think there is a high need for emotional support as well. Our kids live with a lot of anxiety and fear and so do we. Congrats on that grant- that is so absolutely amazing!!! Great post!

  2. Oh how I wish we had something like this in Wales! Everything you’ve said here is so very true. It can be a very lonely place being the parent of a severely allergic child. Friends try to understand but unless you’ve been there, you can’t really appreciate how difficult it is coping with the fear and frustration on a daily basis.

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  4. Just want to add my support on this too. I find it frustrating that even at our hospital they give MIB scratch tests to base allergy management on. He showed no reaction to peanuts, even after being admitted to A&E after eating them. The RAST test showed he is most definitley allergic. It is crazy that if we didn’t push, they’d make decisions on something that is wrong. So much info I find out is from other parents. It is why I started http://www.myitchyboy.co.uk although I don’t have enough time to include everything I want to on it. I wanted to give reassurance to others that they are not alone and it has been great to find other sites like yours to know I’m not alone. Keep up the good work on this.

    1. Thank you! As I understand it it’s v difficult as blood tests can be erratic… food challenge appears the only conclusive way of knowing for sure, but obviously that requires hospital supervision and isn’t a great deal of fun! It isn’t an exact science, I suppose, which is why a good allergy doc is absolutely key and support from other people is just as vital. Hopefully the support group will drum up some, well, support…

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