Fight for your right to party!

SO, HERE we are surrounded by the debris of a summer get-together. But unlike the old days it’s not cig butts and wine bottles; this time I’m talking grapes, free from biscuits, and two empty pots of tea, because today we hosted the allergy parent support group for the very first time.

You only realise how keyed up you are about mass gatherings with a food allergic child when you are finally able to hold or go to one without any worries. No-one this afternoon was going to turn up with a peanut butter sandwich in a lunchbox – and I didn’t have to warn anyone of the dos and don’ts in advance.

That alone is a very good example of why an allergy support group can be amazing: you and your kids can join a bunch of other people without the usual catalogue of instructions to be issued first, knowing that if your child leaves your sight even for a second they won’t get their hands on something they shouldn’t and, actually, if they should react to anything every single person there knows exactly what to do. What a relief.

We had a great turnout – 15 or 16 people, I think, with a clutch of kids aged from five months to 11. On hand to answer questions was the very warm and lovely Dr Tammy Rothenberg, formerly of St Mary’s Hospital, Paddington, now at the Homerton in Hackney, along with St Mary’s paediatric allergy nurse Katherine Phillips, who organised the whole thing. All we had to do, really, was put out the grapes and arrange a few chairs.

In the past I probably would have balked at such enforced gatherings, but it’s honestly a wonderful thing to meet parents in the same boat. I can’t catalogue every child’s list of allergies here, but I can’t not mention the amazing Mum whose nine-year-old son has multiple, severe food and environmental allergies (sleepovers involve carting his own bedding, own pillows, a bagful of medication and all of his own food to friends’ houses).

She cooks his hot school dinners to match those being served up to the rest of the pupils and takes them down to the school three times a week; she kits him out in special suits so he can enjoy the bouncy castles like the other kids (he has a serious latex allergy); she doles out his daily doses of super strength antihistamines, nasal sprays and heaven knows what else… and she has taught him to cook everything from pancakes to omelettes and Yorkshire puddings (egg free, wheat free…) and does everything in her power to make sure he enjoys all of the activities – scout camp, youth club – that his mates do.

Then there are the parents who won’t let their daughter’s peanut and tree nut allergies stop them from exploring the world. They’ve calmly visited the farthest flung spots, from Libya to Ecuador and Georgia, EpiPens in tow and a determination not to let fear hamper their lives.

It was emotional, too: the Mum who’s just found out her tiny baby is allergic and who ended up in floods of tears trying to tell her story. A little over a year ago that was me – weeping on the way back from the doctor’s, blubbing at the thought of school fetes and parties and school trips and holidays blighted by panic. Don’t get me wrong, I still get teary in the supermarket cake aisle from time to time but it’s notable how the whole thing becomes normalised in such a short space of time.

And from these parents I’m going to get recipes for allergy friendly pizzas, pumpkin muffins and lamb tagines, recommendations for nut free rice crispies, the name and number of a fabulous sounding woman who comes to your home and cooks up a freezer full of allergy safe pies and pastries, and, simply, contact with a network of people who understand exactly what it’s like to worry about ever letting your child out of your sight.

We’re going to arrange a local follow-up meet in Clissold Park, Stoke Newington, for later in the year (check back here for more info). And there’s another support group meeting on July 11 at St Mary’s in Paddington (email info@allergysupportgroup.org.uk) for details.

All I can say is, if your child has recently been diagnosed with a severe food allergy, you really aren’t alone. There are other parents just like you out there desperate to share information, ideas and experiences. Ask your local hospital or GP surgery if they would be interested in helping you set up a support group – or contact us if you live in London for a meeting coming up near you soon.

For more on the St Mary’s-backed support group scheme click here

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11 thoughts on “Fight for your right to party!

    1. Hello – so sorry you missed this one but hopefully see you at a future meet? I think everyone was happy to swap emails and the nurse is going to be sending out everyone’s contact details soon so I’m sure you could be included on the list since you were set to be there anyway. Then maybe you can ask the travelling Mum how she copes etc? She was first to confess that they “only” deal with the peanut and tree nut allergy so it may be easier than for those with multiple weird and wonderfuls – also that they haven’t braved the likes of Thailand etc – but am sure she’d be a mine of helpful tips… Will keep you posted x

  1. Hi Alex. What a great success! I’m glad everything went well and you all had a great time. I am running the Hertfordshire equivalent in a couple of weeks. Can you tell me what format the meeting was in? I had planned a Q&A session with the Dr and nurse and also some epipen and jext pen training with the nurse. Does that sound about right?

    Madison

    1. Hello! Thanks! Sounds perfect – we had a little intro by the allergy nurse, explaining what the aims of the support group were, then each parent detailed their child’s allergies, and how/when they were diagnosed, and anything else they wanted to add (e.g. philosophy on dealing with allergies/pressing worries etc)… That sparked questions and discussion anyway, and then there were also questions of course that only the doctor could answer. It was fairly informal but structured, if that makes sense? Then a cup of tea and a chat and another round of recipe-swapping/questions for the experts… seemed to work well I think. Good luck! Would be great to hear how it goes.. x

  2. Pingback: Support group dates… | yesnobananas

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