Friday, 25 August 2017

Notting Hill Carnival, with the children?

My husband's heritage is half-Caribbean, and he's attended Notting Hill Carnival for years, playing in the procession for several years before he met me. We've visited Carnival almost every year since we met, and so it seemed only right we take our children along, even though they are only little. I consider it part of their culture.

Despite Notting Hill Carnival's reputation (as far as some are concerned), the Sunday is actually the children's day, when you'll find lots of children in the procession, as well as spectating. It's mud-mas day, so expect to get at least splashed with a mix (often spa clays) resembling actual mud, if you get right near the procession itself, or know someone who's in one of the mud bands.

Find a quieter area to hang out and watch the Carnival go by, with a little space to dance in the pavement. Ladbroke Grove is the busiest, with more people per square metre than you've ever seen in your life. Avoid it if you're with children!



Carrying a baby or toddler in a baby carrier or wrap is the easiest option, as they can have a sleep as well as being held safe. Our 2 year old will be carried this way this year, despite weighing about 13kg. The 4 year old will be on daddy's shoulders! If you've ever been near the Carnival, you'll know a pushchair isn't an option.

Our eldest is allergic to nuts, peanuts, anything that 'may contain' or is cross-contaminated, plus beans, peas, chickpeas and lentils - some of which are staples of Caribbean food. So we don't feed him at Carnival. Instead, we take a packed lunch or duck into a Sainsbury's Metro well outside of the Carnival area (shops will be low stock or limited range) and grab him a safe sandwich and snacks to take with us. His two EpiPens are always carried with us, so that's nothing new for Carnival.

The little ones' ears are sensitive, so each has a pair of headphones to muffle the Carnival beats which are very loud up-close!



We go to Carnival for a few hours, then head elsewhere for dinner - due to the allergies, we seek a safe chain, which are easy to find across London. It's also nice to leave Carnival before everyone else tries to do so on public transport!

Apart from this, dance. Relax. Enjoy the celebration of unity, which is more important in today's world than ever before. Think of those Grenfell sufferers and survivors so near the Carnival site (some are wearing green in their honour this weekend). Watch the Carnival smiles and the confidence of the procession and party goers, and forget whether or not your bum looks big in that, because that too is something to embrace in the Carnival spirit.

Because for all the same reasons I'm scared to go and take my children, I'm determined to.




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.