Monday, 17 July 2017

Bad Press

If you were trying to break into an industry, or raise your profile, what tactic would you employ? Perhaps you'd do something amazing, unusual or bizarre, to how you were different and special. Unfortunately, some people don't quite have that talent and therefore they troll and seek attention by upsetting the likes of us on social media. It's getting a bit predictable.

I'm not naming names, because I don't want to give them the bad publicity they're so clearly after, but some quarter-celebrities, or 'journalists' you've never heard of, will be posting some useless, poorly-written, badly-justified text right now, probably targeting a vulnerable community of people who will bite back (the allergy community being one of these, and of course, not protected by anti-discrimination laws like some other groups are).

Let's not respond by spraying their social media pages with facts. Clearly, we're more clued up than they are. We only make ourselves more of a target. Forget the nobody's name, remember they are desperate for attention (so don't give it) and work on what's important - sharing useful, correct, factual information; rallying together; spreading the facts like beautiful, intelligent confetti to fill our friends' feeds, instead of hateful, worthless ammunition that's placed there for media attention.

Over and out.

Saturday, 18 February 2017

#ALWAYSCARRYTWO

I'm getting annoyed. Cue Hulk: "You won't like me when I'm mad...". We need two Epipens (I'd ideally like approximately forty-five, to be honest). But we #alwayscarrytwo and here's why...


You see, I know what the stereotypical allergy parent is. Of course, we're all neurotic and obsessed with our kid getting a bit of an upset tummy from a tiny bit of this or that. We've probably made the whole allergy thing up, you know, for fun.

Except, we have not.

We don't consider it 'fun' that we have to pester others about not feeding them 'this or that', or anything that 'may contain', and to carry the Epipens at all times, "even if it's just to the park and they're not eating anything". It's not fun having to tell a toddler that the rest of the party can eat that cake, all except them. Planning any day out or holiday or even school or nursery is a military operation.

Not because they might get a poorly tummy, but because they could die if they ate that food.

I hate even writing that sentence because it sounds morbid and a bit sorry-for-ourselves, but the fact is, I had to accept the potential danger to my child's mortality when he was seven months old. I take every precaution possible, and I want to yawn when I hear myself talking about the allergies again, and still, there's a risk.

Carrying two Epipens does not take away the anxiety of daring to step away from your child and leave them in someone else's care, but it does mean you have a second chance if someone gets that first attempt wrong, which is easily done, or if the pen fails. I've never administered it myself, so my knowledge is only theoretical, let alone the person who might be with him if he ingested something; I'd like us all to have more than one shot (pun intended).

If we only had one pen, I'm pretty sure I couldn't set foot on a plane, or let's face it, anywhere not within very easy reach of a hospital or ambulance. I'm not certain I could send my child to nursery or school. However much you ingrain the importance of safe eating in your child,
there's the risk of cross-contamination - an unknowing adult slicing something with an allergen-infested knife, or a child having eaten the allergen and spreading it with typically sticky-toddler hands.

Nobody is asking anyone to feel sorry for us, because our children are lovely, bright, marvellous, enviable, empathetic little beings, and we protect them like superheroes.

But don't let prescriptions be reduced to one pen only when we desperately need two in order to lead a normal(ish) life with our families.

If you care, there's a petition here: https://www.change.org/p/this-petition-supports-the-carrytwo-campaign-we-ask-the-bsaci-to-reverse-its-recommendation-of-one-auto-injector-pen-back-to-two and a Facebook page here: https://www.facebook.com/CarryTwoPens/ (thank you).

Tuesday, 13 September 2016

Legume allergies: avoiding some or all?

When my son had his last allergy blood tests (December 2014), the results showed him to be allergic to peanuts, almonds, lentils and green pea.

He has also reacted to baked beans and to locust bean gum, a thickener found commonly in ice creams and lollies, Philadelphia cheese (not supermarket own brands) and some yoghurts.

It's not clear from the results whether they actually tested for beans and other legumes, or other nuts - whether they've just listed the positive results and actually tested for other things which came up negative. I need to call them and ask if that's on record.

Anyway, it made sense at the time to avoid things like kidney beans, runner beans, chickpeas and mange tout, although since joining and participating in forums I'm becoming more clued up on this allergy lark and wondering if we should try and give him some of those things. I don't avoid soya, which is also a legume.

Has anyone else with legume allergies got any useful advice? Are you allergic to some or all legumes? Or any recommendations for new veg to try, as we get stuck in a bit if a broccoli, carrot and sweetcorn rut here!

Sunday, 14 August 2016

Dear Favourite Cafe

I visited your café today with my two young children, as I have done many times before as it is a favourite of ours. My three-year-old suffers from a peanut allergy, the potential effects of which are unpredictable, so I was disappointed to see your new menu and note that peanut butter sandwiches are now an option on the children’s section.

Whilst I understand that other people in the world do love a peanut butter sandwich (as I once did myself!), I do feel I should explain my concerns to you, although I am sure you have carried out your own risk assessment.

Allergies in general  are on the increase, and 8-10% of children in the UK now have a proven allergy (very different to an intolerance). The UK is one of the top three countries in the world for incidence of allergies in children.  Peanut is a particularly worrying allergen because it is the food that most commonly causes the most serious type of allergic reaction, anaphylaxis, which can be fatal.

For people with this type of allergy, there are obviously concerns with eating out, but we carry out our own risk assessment to consider the risk of cross-contamination. With peanut butter in a café with a children’s playhouse, for me, this risk would be too high due to the risk of toddlers’ sticky peanut-butter fingers all over the toys and surfaces. This is irrespective of your hygiene procedures and ways in which you mitigate the risk in your kitchen.  A parent’s quick wipe of a hand with a napkin or baby wipe is unlikely to remove residue.

I know that you cannot reconsider your entire menu based on one child, and I would not expect this. However, I would urge you to reconsider the risk, factoring in advice from Allergy UK and The Anaphylaxis Campaign, as I consider this item on the menu to be high risk.

I hope this will give you some food for thought (no pun intended!). I am just one person, but I cannot risk bringing my child to the café again considering the potential risk of other children covered in a substance that could cause him serious harm and even stop him breathing.  A child who carries epipens is just one example; many children may not yet be known to suffer from this allergy and I  do not need to tell you what happens if someone suffers anaphylaxis without an epi pen available.

Yours faithfully,

Nut Allergy Mum

Tuesday, 3 May 2016

Cake!

A few years ago, I'd never have imagined I could make a birthday cake myself (or bother, when you could easily buy one). But of course, sourcing a nut-free cake isn't simple, so my husband and I set about a joint effort to make one ourselves for Tot's third birthday party.

I made the red velvet cake and buttercream, and he did the icing and decorations, because he's Mr Precise!

I was very pleased with the results, and so was Tot!

Friday, 29 April 2016

Discovering the legume allergy

The Christmas before last, when Tot was 19 months old, his cherubic face was covered in eczema. He had had Hand, Foot and Mouth disease (along with his dad), and his skin hadn't recovered. His eyelids were puffy, and it hurts me to say it, but he looked like a burns victim. The way he looked attracted some attention from other people too. I'd field questions about his face - people suspecting scarlet fever or some other contagious illness.

I don't want to harp on about it and really don't want sympathy; you don't feel sorry for yourself looking after your child's needs, and I suppose that extends to anything - whatever your child's needs are you just do it and it becomes your norm. It did make me realise how people must feel whose children have disabilities, special needs or birthmarks: something visual that people will notice or remark on. I hope I would always be able to handle such issues with sensitivity.

I often feel sorry for Tot, but on a good day I remind myself he has never known anything else, so he probably doesn't question it. He knows he can't have something, and that's final. He knows we read every label. It would probably be harder to develop a nut allergy later in life, when you were used to just merrily eating whatever you fancied. I also remind myself there are worse struggles in life.

As his skin kept flaring up, we kept a close eye on what we were giving him to eat. His nursery lunches, which I provided, didn't seem to have anything in them; I checked everything meticulously. He had by now had the occasional reaction to baked beans, peas and lentils: hives or vomiting, which we handled with Piriton. It was a bit of a mystery.

Eventually, it was my husband who noticed the rogue ingredient in Philadelphia cheese spread. There was me thinking it was just soft cheese! It contains a thickening agent called locust bean gum, the bean being in the legume family and also known as carob. I'd been giving him Philadelphia sandwiches, unwittingly, and thinking it was all good as there was no 'may contain' label for nuts. Obviously we stopped giving it to him immediately after that, and now stick with the supermarkets' own brands.

As his eczema was taking a while to clear, I went to see the eczema nurse at the doctors, who suggested bathing him every other day or less (not daily), only using emollient (Cetraben or Epaderm) and moisturising his skin with Aveeno as a preventative. When the skin flared up and wouldn't resolve itself, we could use 0.5% hydrocortisone cream, sparingly. This skincare regime seemed to do the trick and so far has not only got rid of the flare up but prevented further outbreaks (alongside the avoidance of any of his food allergens, of course).

The same winter, he kept getting flare ups at nursery after his lunch, causing me to scour his yoghurt pots and any non-homemade items for any hidden legume ingredients, and wondering if there was another allergy like dairy or egg. I was getting panicky every day at 12pm when getting my lunch at work, mobile in hand, awaiting the call to say he'd had a reaction and hoping it was only hives, no epipen.

It was the nursery manager who suggested it might possibly be the hamster, as they got it the same day his skin broke out. Checking its food, there were no nuts, but it did contain locust bean. I would never have guessed, but it seems being in the same area whilst eating was setting him off. They moved the hamster out of the room, and sure enough, no more reactions. Bizarre.

When you're troubleshooting the reasons behind reactions, the Facebook groups are worth their weight in gold. I have to say that the parents I've met in those groups, total strangers, have given so much valuable support, advice and suggestions (what on earth did people do before the Internet?). Going to medical appointments armed with the right questions is absolutely crucial. I have to thank the Eczema Parents group and the UK Parents of Kids with Nut and Peanut Allergy for the forum in which to ask questions, seek support and share concerns or ideas with other parents facing the same.

Wednesday, 30 March 2016

How we found out (Peanut Butter)

When Tot was nearly seven months old, I took him to his regular weigh-in and the health visitor asked about weaning. He was really just on purees then, having started on food just before six months. Get him onto more finger foods, she said, protein and meat. She suggested marmite or peanut butter on toast.

The latter was something I ate often, and always had been a big peanut butter fiend. I now shudder when my 'Facebook memories' come back to haunt me with statuses about how much I love the KitKat Peanut Butter Chunky Bar, or chocolate peanuts - all products I now wish could be wiped from the shelves!

Anyway, I decided that lunchtime that he and I would enjoy peanut butter on toast together. I was a bit miffed when he wasn't that appreciative, in fact, he didn't seem to want to eat it. It was one of my favourite things! Sitting with him and encouraging him, at first I thought I was imagining his swollen upper lip, then his swollen under-eye.

My automatic reaction was wrong: I called the health visitors' clinic, who couldn't help, and then the doctor's. I probably should have called the hospital or at least 111. It scares me to think what could have happened if he'd eaten more of it or if the reaction had been worse, and me not knowing enough, although I remember telling the doctor's receptionist that it wasn't anaphylaxis - I'd heard of that, and I was sure his breathing was OK. I took him to the doctors in my car, and the doctor checked him over and sent us off with a prescription for Piriton - which I waited for for over forty minutes in Asda!

Now, I would be calling 999, in case that reaction worsened. As someone pointed out to me recently, you can't perform CPR when you're driving and your baby is strapped into a car seat in the back. I also now know I could have just bought Piriton over the counter, but it was a more innocent time for me in terms of allergy savvy.

Doc then sent me to the paediatrics ward of the hospital for blood tests for Tot. Those results came back about a month later with positive IGE for peanut.

It was two months before we got our appointment at the hospital's paediatrics ward to discuss those results. The consultant prescribed epi pens and I was shown how to use one, and advised to avoid all nuts, peanuts and 'may contain' foods.

The gap between finding out about the allergy and receiving advice and epi pens is worrying now that I know more. We just avoided nuts and assumed the reaction was not the type that would cause anaphylaxis, but the fact is that peanuts reactions are unpredictable and that is why epipens are recommended, because one mild reaction does not mean the next is guaranteed not to be severe. I would advise others to request an epipen as soon as possible for this reason.

[Further post to follow on how we found out about the other legume allergies, and all that malarkey.]