You can’t: talking to young kids about their allergies

22 May

I have a close relative who can sometimes be as emotionally sensitive as a sledgehammer. And one extra thing that I believe you need when dealing with an allergic child, is a great deal of sensivity when talking about their allergies.

This relative (let’s call them Z), somehow manages to end up telling Adam every time they see him about which foods he “can’t” eat.

It’s amazing just how skilled Z is with finding situations where this topic could come up. For example, they will be reading a book together and where there’s a picture of a cow, Z will suddenly go from talking about cows and dairy products to a blunt statement like “but you can’t drink milk or eat cheese”. Or at the dinner table, I mention hummus in passing, whilst talking about something completely different, and Z takes the opportunity to turn to Adam and say “you can’t eat hummus because you’re allergic to it”.

What’s my problem with what Z says? Nothing. The content is factually correct. But I don’t think that its relevant nor useful to bring up Adams allergies in this way. And when it is relevant to talk about them eg. when he initiates the topic or we really are talking about food, then I think there are other ways of talking about it that take into account that he is a little human with feelings who has to deal with a pretty big issue.

Z responded to me saying this with “allergies can’t be taboo. He needs to know he has allergies”.

Adams almost 4. He’s known consciously and clearly that there are foods he cannot eat and ways his life is restricted compared to other kids for well over a year now. He knows many of his allergies off by heart and likes listing them.

But we’ve explained it to him in a way that focuses on what he “can” eat rather than what he “can’t” and on the safety of the food rather than on him and his body.

So if talking about dairy, I say “we don’t eat dairy. We drink rice, oat and hemp milks instead!” I’m lucky in that I don’t eat any diary whatsoever because I have a diary intolerance so I can at least say “we” in that sentence so Adam isn’t alone in not eating that food. I will always highlight what he can eat instead whenever we talk about what he’s allergic to.

If he picks up a chocolate bar in a shop I will say “that’s not safe for you honey, lets find something that is”, rather than just say “you can’t have that”. With over 20 food allergies it does mean that finding something that is “safe” can be extremely difficult in little shops but you’re almost guaranteed to find salted crisps for example or an apple juice that Adam can have (yes we ignore the “may contain” warnings as otherwise there’d be close to absolutely nothing that Adam could eat).

For the same reason I avoid taking Adam to any random shops or shops I don’t know. If I do need to take him shopping, we go places where I know he will have a choice of things he can pick off the shelf to eat and not be faced with aisle after aisle of unsafe foods. Health food shops are ideal for this and second best are large supermarkets.

So in no way are Adams allergies taboo, he is in fact quite proud of them and loves chatting about them. But I do think that as his parents its our job to make it as easy and comfortable as possible for him to talk about them and be as subtle as we can. If he doesn’t grow out of any of them then daily life for him as he gets older and has to fend for himself might be quite tricky.

I don’t want to make the whole thing harder for him by focusing on the”can’t”s rather than the “can”s.

How do you handle chatting about allergies with your child? Do you think its important to try as best you can to deal with it sensitively or do you believe in being blunt from the outset? Has how you talk about allergies with your child changed as they’ve gotten older? I’d love to hear your thoughts so do leave a comment!

Arty crafty allergens

17 May

iPhones are great but the cameras on them are a bit rubbish. Trying to take a photo of a moving child in anything less than perfect light conditions gives blurry, dark photos. Which means I can’t show you what Adams (4yo) left eye looks like. It’s basically almost completely swollen shut.

Things have gotten much easier recently as he seems to not get hives as quickly as he used to from touching trace amounts of food on surfaces (contact allergy). Which means I’ve probably gotten a bit lax about things.

We recently joined a pottery group and today was the second session where the kids were painting their fired clay. I usually try to check the ingredients of all crafty products because Adam has gotten very itchy, particularly overnight, from various play doh type materials as well as paints and ink pads.

Probably because I was busy chatting with friends, and am a bit shattered being 7 months pregnant, I totally forgot to ask the instructor about the paint/glaze ingredients until I picked up a pot and noticed it smelled fishy.

Adam has been using the glaze for about half an hour by that point with no hives so when the instructor said that fish is an ingredient (how odd is that?!) I thought Adam would be fine even tho we know he has severe allergies to salmon and cod (and probably more that we haven’t yet tested for).

But during the session I noticed him touch his face for a moment and from them on his eyelid was a bit red until a couple of hours after falling asleep his eye life was obviously very swollen. He’d been really uncomfortable in his sleep and very itchy even tho the last few weeks his sleep has been really peaceful (thank God!)

Because he won’t take any meds willingly we had to wake him up to give him a new toy he was coincidentally promised to get when our new bed arrived, which it did today (we now have a proper bed woohoo!). Hubbie went off to mix a dose of antihistamine into an apple purée pouch. Adam probably knew what was up (us trying to smuggle the meds in with his favorite food) but ate the whole pouch worth anyway.

Hopefully, God willing, by morning the swelling will have gone!

It just goes to show that you really can’t let your guard down and do need to sometimes be the only parent in the room asking for obscure details. It also illustrates the point that food allergies really aren’t just about the “food” that we eat but concern, for example, the skin products you use, the crafty materials you buy and even the furniture you have (nut oils are used even on some wooden kids play kitchens!).

Eco living and holiday accommodation

13 Apr

Sometimes having an allergic person in the house can be a relatively un-eco experience.  There are times when you use disposable Dettol surface wipes, because it’s the safest and easiest thing to do, rather than your usual eco surface cleaner with a washable cloth.  Dettol surface wipes promise that they remove allergens and are approved by Allergy UK.  Not only are no eco products approved by Allergy UK, they can often contain allergens themselves (e.g. Ecover washing up liquid containing wheat gluten). 

When we’re out and about and I’m not within reach of a bathroom I do use Dettol surface wipes on Adam’s hands to try and remove allergens.  Baby wipes just can’t do the same job. I’m aware that Dettol contains ingredients that could be harmful but anaphylaxis could kill him within 7 minutes.  The toxins in Dettol will take decades to take effect.

We also don’t recycle any packaging with allergens in it because Adam enjoys helping with sorting the recycling and I can’t risk him coming into contact with dirty packaging.  So that goes straight in the bin.  The proportion of recycable waste going straight in the bin of total weekly household waste is minimal.  But still, if Adam didn’t have allergies, those things would be recycled too.

I tend to wash clothes much more often than would be necessary if we weren’t dealing with allergies.  Almost after every outing Adam’s clothes go in the wash, particularly any tops as he can easily get allergens on his sleeves from rubbing on playground slides, hugging other kids etc.

So I know that living with allergies isn’t as eco a lifestyle as it could be ideally.

This week we were planning on going to stay in Devon in a self catering cottage that is part of a 5* holiday complex.  The price per night was pretty high so we thought that we could depend on a high standard of cleanliness, once we were assured that the flooring in the eating area isn’t carpeted and that the furniture is all wood or leather (and hence easily wipeable).

I wrote to the owners today, explaining why I’d asked for an extra thorough clean when making the booking last week.  I had asked if they could use Dettol surface cleaner rather than the Ecover products they use as part of their Green Tourism effort and explained why.  I asked if they could give the cottage an extra thorough clean for us.  And I said that we’d bring our own bedding and bed linen.

To me this seemed reasonable-I know that Adam’s level of sensitivity to allergens is rare and hence that they wouldn’t be getting a similar request from other guests that weekend.  Initially I’d planned to give the cottage a clean myself on arrival but we were planning to arrive on Friday evening ie. just before Adam’s bedtime, and paying what we were paying I thought it would be ok to ask the owners to put a little extra effort in to ensure our comfort.  I’d emphasised that this would be almost the first time we’d ever been away with Adam not in a tent and hence we would love to be repeat customers if things worked out.

But I just got an email back basically saying ‘no can do’.  They can’t use Dettol because it contains some ingredient they’re not happy with and they only vacuum the carpets once a week anyway.  They can’t do a thorough vacuum and clean of the cottage because they won’t have time.  Communal areas (including all the exciting facilities) are only cleaned once a week. They’re concerned about their Green credentials if they used Dettol on this one occassion.

My husband says my ‘expectations are out of whack’ but I feel that when we go to Carluccio’s for example, they have no problem with using up the Chef’s time for her/him to chat with us about our requirements and make a dish from scratch for Adam – with no cross contamination and the trouble that that entails – with their own hands.  It’s part of looking after customers so they keep coming back and including as many different people into a customer base.  If the cottage owners were able to help us out, we would not only be coming back again but would be recommending them to other allergy sufferers.

I obviously disagree with my husband about the problem being my expectations (I would, wouldn’t I!) and would be very interested to hear what other people’s experiences have been with finding holiday accommodation in the UK where the owners refused to help out or, perhaps instead went the extra mile to make it a comfortable stay for your allergic child.

 

Long time!

2 Mar

Its been such a long time since I last posted!  We were without WiFi for 3 months after moving home (thanks Virgin Media!).  So much has happened in the meantime, especially on the allergies front.  We had family come to stay for 6 weeks and although I didn’t really imagine it was possible, they stuck to “Adam’s diet” whilst they were in the house for that whole period.  In addition I managed to learn a good few recipes from my mother in law that I can cook for Adam that are easy and nutritious! How exciting is that?  (Especially for someone who still, after almost 3 years of living with an allergic child, often struggles to think of what to cook).

I’ve also discovered new foods in the enormous Tesco that we’ve moved near to (yes, I know I’ve written about how awful these supermarket monstrosities are but you’ll know just how fab it is to discover new foods you can make your child, wherever they come from).  Over the coming weeks I’ll hopefully share some of those recipes tho I’m also 5 months pregnant now so in a bit of stupor in the evenings so it might take me even longer to write them up.

Pregnancy of course got me googling about what to eat or not to eat whilst pregnant to impact the chances of our second child having allergies. I’d read on someone else’s blog that there is one specific probiotic that can help prevent the development of allergies but then when I’ve tried to read up on this myself, all the studies I could find mentioned ‘probiotics’ without singling out any specific one.  Apparently, in any case, it only becomes relevant towards the end of pregnancy and is the only thing that you can do whilst pregnant that does seem to have an impact on allergies (then again, breastfeeding for example is meant to decrease the risk of allergies and Adam developed all of his whilst he was still being breastfed).  If anyone knows of anything that pregnant women should know on the allergies front, please share links!

On the friends and social front, we are mostly seeing old friends i.e. people who know everything there is to know about Adam’s sensitivity to various foods.  So its been a while since I’ve needed to explain things to anyone (which can sometimes be a bit tricky) and its been a while since I’ve gotten really uncomfortable because someone’s offered Adam something he can’t have or had a child coated in dairy or nuts.  In fact, I wanted to write about just how amazing people can be and how a situation like an allergic child can really bring out the best in people.  For example, I’ve been really, really amazed at how many of my friends have gone out of their way to buy identical snacks for their kids to the ones they know Adam usually has.  This means their kids can easily share with Adam, which they love to do, and that we can all be relaxed about what food is about when the kids are playing.  I never expected anyone to adapt like this!

I’m also blessed to have friends who, if they do have birthday parties for their kids, have them outdoors in the woods!  It means we’ve been able to go and leave before the food is served or, at next week’s birthday party, I’ll just take Adam along some of his own food to have.  Outdoors is always much, much easier for us as thankfully Adam has no environmental allergies and even if kids are eating food its unlikely many surfaces will get contaminated that Adam would be touching. Saying that, many of my friends aren’t into the birthday party thing, nor are am I, thinking it encourages selfishness in children and also can create an environment when too many kids start losing their marbles from overexcitement, exhaustion etc.  At 2 or 3 or 4 years old I’m not sure kids even understand the whole birthday party shebang and can find it distressing particularly if they’re the ‘birthday child’.  So the allergies thing might even end up being a useful excuse in the future to not go to particularly crazy sounding kids birthday parties!

“But what on earth CAN he eat?!”

30 Sep

The conversation usually runs something like this:

“So what is Adam allergic to?  Is it dairy?”

Me: “Um, yes, dairy.  And also soy, eggs, wheat, nuts, peanuts, chickpeas, sesame, beef, fish, bananas, strawberries.  And well, many more, just I can’t always remember them all”

“[bit of a pause] So what on earth can Adam eat?!”

I then often hear about another family the person knows with allergic children who ‘can only’ eat non-wholewheat pasta and white rice.

It’s funny because over 2 years ago when we first heard that Adam was allergic I also felt like our options were so extremely limited because of the number of foods we’d have to avoid.  I grew up thinking that all pasta was made with wheat (not even wholewheat) and that the only rice that existed was white.  We ate fish almost every day at home and when I became vegetarian in my late teens I ended up eating soy or Quorn products almost daily.

So initially, after Adam’s diagnosis at 9 months, I thought  “heck, there’s really nothing we can eat”  (because I switched to “Adam’s diet” the same day since I was still breastfeeding him umpteen times a day). 

But now, it seems so obvious to me that of course there is such an incredible array of foods that are safe for Adam that it sometimes takes me a while to try and explain that actually, thank God,  his diet really is more varied and nutritious than the average kid’s. 

First off, if you’ve also just learned about your kid’s allergy, get yourself to a health food store or a massive Waitrose or Sainsburys.  Forget about your local average-sized supermarket.  You’ll likely find very little and end up wandering the aisles either in tears or very close to crying as you look upon shelf after shelf stacked high with allergen-packed foods.  At least a large Waitrose will have a decent sized ‘free from’ section as well as have foods dotted around the ‘normal’ produce that will be safe for your kid, particularly grains/seeds that can be hard to find e.g. quinoa, buckwheat, brown rice pasta.  Health food stores are the bees knees for allergy sufferers as they are filled with a much much larger variety of foods even if the actual store is quite small.  I’m sure there have been studies into just how unvaried the food in supermarkets really is.  

Secondly, you’ll need to avoid looking at the prices.  Seriously.  Because whole grain foods and more speciality foods are really very expensive.  A bag of organic brown rice pasta costs £2.50. A bag of organic wholewheat pasta sells at £1 in the same store.  Get what you can on prescription too.

Thirdly, wander the fruit and vegetable sections, in particular, with a really open eye.  Don’t just go for the broccoli and carrots you’ve been buying for  years but have a real nosey around to find new things you haven’t tried before.  Don’t worry about not knowing ‘what to do with them’.  Most things can be boiled, stir-fried, baked or roasted.  Adam really likes papaya for example which we never used to buy before.  He loves okra too which I’d never cooked with before.  Also try not to be put off by myths about certain foods e.g. that spinach is gross and must be served all limp and flavourless.  There’s loads you can do with spinach and I use it in almost every dish (altho I cheat and use it frozen and then put it in the blender so its incognito in the dish). 

Fourthly, accept that you are unlikely to find many recipes that are fully suitable for you.  Gone are the days when you saw a Jamie Oliver recipe and just bought the ingredients, followed the instructions and bam, you had a wonderful meal.  Now you’ll need to adapt almost every recipe, usually more than once.  You’ll soon suss out what substitutes well for what (I’ve used google countless times for things like ‘substituting xyz in a dish’).  You’ll need to become adept at experimenting and initially, if you’re anything like me, you’ll create pretty grim concoctions.  But as time goes by, you’ll realise there is a lot you can do for flavour for example with just ginger, garlic and coriander.  You can grow your own herbs so your child has fun picking them and so you have some flavour enhancers always to hand. 

Fifthly and lastly, keep lists!  List all the foods that are safe for your child to eat and keep that list to hand.  Particularly in the first days its wonderful to know what you can cook with and what you need to pick up from the supermarket without having to read labels over and over again (altho for things that are processed always read the labels even on foods you’ve already bought before).  Also list all the dishes that you know your child likes.  Initially you might have just one dish you know how to make and which is safe for your child.  But over the months and years you will expand your repertoire!  Keep a big stash of snacks such as Anisa Buckwheat crispbreads or Organix Date and Apple bars which all kids love.

I’ll leave it for another post to mention some of the staple foods we keep in our storecupboards and fridge as well as some of the really easy recipes that are nutritious and which hopefully you won’t need to adapt. 

I hope this post is helpful particularly to those who are in the first year or so of coping with multiple allergies in their family.  It took me at least a full year to stop feeling a bit despondent at the number of things we couldn’t buy and instead to start being excited about the wide variety of foods we could buy.  What made things worse was excitedly coming across allergy websites which promised ‘free from’ recipes that were actually mostly full of things Adam is allergic to.

Feel free to leave a comment with any other tips you might have or to share your experience of dealing with this issue.  Happy food exploring!

Carluccio’s, ti adoro!

25 Aug

Carluccio’s!  I adore you!  Thanks to your wonderful chef and manager we ate out as a family for the first time ever!  Yes, my husband, 3 year old boy and I, sat down for a meal that someone else had cooked and it was in a restaurant!  And I could really trust that it was safe. Until last week, my boy didn’t even know what a restaurant was!  Its funny how important it seems that we have finally eaten out together.  It was such a momentous feeling, over something that, in the great scheme of things isn’t even that important.  But to us, on Sunday, it was profound.

We decided to head down to Cabot Circus (the fancy mall in Bristol city centre) on Sunday to get a new bag for me and to have a lemonade and coffee at Carluccio’s.  We’ve always had a soft spot for Carluccio’s wherever we’ve been (we’ve been in their branches in London, Brighton and Bristol) as it’s got lovely food, is reasonably priced and has a really unfussy decor.  The clientele is pleasant too (which makes a difference!).  We decided to sit outside and luckily it was a warm day.  Inside I figured there were too many food fumes to risk triggering Adam’s asthma or hives.  As we came into the outdoor area we passed a ‘Gluten Free’ menu.  I didn’t pay attention to it and we sat down and my husband ordered his food (I find it impossible to eat or drink food that Adam can’t have in front of him but my hubbie is untroubled by this).  We spent a little while wiping down the table and Adam’s chair with Dettol wipes and then put down a napkin to serve as Adam’s ‘table cloth’ to make sure everything was as clean as possible.

It suddenly occurred to me that if there was a whole dedicated ‘Gluten Free’ menu then maybe the chef might know a thing or two about cooking for allergies (unlike the staff at our local Boston Tea Party that managed to serve a nut in my nut-allergic friend’s sweet potato wrap!).  When the waiter came over he said we could discuss our boy’s allergies with another waiter but I asked to speak to the chef directly as I’d read on the Food Allergy and Anaphylaxis Network facebook page that other parents had recommended discussing things directly with the person cooking the food.

Polishing off his first ever meal in a restaurant!

In Carluccio’s their policy is such that any discussions between the chef and a customer about allergies must be overseen by the manager.  When I began speaking to them I fully expected they’d say they wouldn’t be able to cook anything at all that would be safe for Adam.  When the chef said she could guarantee no cross-contamination and that in fact she would cook a fresh tomato and basil sauce for Adam to ensure it would be safe I started tearing up.  Man, did I want to hug her!  I blubbed about how hard it is to live with so many allergies and how I was so grateful that Adam might be about to eat his first ever meal out.

Needless to say, when the bowl of beautiful rice and corn penne with tomato and basil sauce arrived at our table and Adam took his first, unprompted mouthful, I cried again.  Adam finished the bowl off himself and even ate the last blobs of pasta sauce that were left behind. We couldn’t believe it!

I was so amazed at how professional Carluccio’s where about serving a customer with multiple food allergies.   I felt that Adam would be safe in their hands, and thank God, he was.  I’m so grateful that he isn’t allergic to corn (and so could have the rice and corn penne) nor to tomatoes, onions, garlic and basil.   Luckily Carluccio’s has branches all of the place and are soon opening a new one in the incredibly beautiful and atmospheric city of Bath.

The Bristol manager assured me that all their chefs across all branches are trained to the same very high level.  So if you’ve been very worried about taking your child out for a meal, then find a Carluccio’s with an outdoor seating area and have a chat with the chef.  Hopefully you’ll have a wonderful meal out too! (Plus kids get a cute little ‘menu pack’ with a puzzle and colouring pencils).

Sun and sensitivity

10 Aug

With allergies you often come across people who just look at you blankly when you say that your child is severely allergic to plenty of foods.  They don’t have a clue what that means in your daily life and might well just think its all in your head.  Well now I’ve made things worse for myself as I’ve come to realise that Adam’s sensitivity to allergens seems to be strongly related to how much sun he is getting.

It sounds loopy to say that a child can be comfortable in a playground on a sunny day but not on a cloudy day!  On the sunny day Adam will likely not get a single hive even when its very busy and kids are eating ice cream around him.  On a cloudy day or when he hasn’t had much sun for the preceding couple of days, he will be itching plentiful hives on his hands and his face and needing antihistamines.

Enjoying a Bessant and Drury frozen coconut desert on the way home after playing for hours in the sun at our local playground

I’d heard about a paper presented to the American Academy of Allergy, Asthma and Immunology 2012 Annual Meeting in March that linked vitamin D levels in one year olds with incidents of food allergies.  Read more about it in this article.  At the time, I hadn’t really noticed a link with sun exposure although a friend had mentioned that her boy suffers more from his allergies during the winter.  So I wrote in April to a leading pediatric allergist to ask the following:

“I wanted to ask you what your opinion is with regards to the latest findings around the links between vitamin D and allergic reactions?  At the moment Adam is 2.5 years old and loves being outdoors so we are out in the sun for about 2-3 hours a day.  Do you think that it is reasonable to suspect that there is a link between the outdoors play in natural light and his apparent decreased sensitivity?”

He wrote back that:

There  is data to support this at a population level in Aus and USA, the data is weak but exists for populations and is only cross sectional ie no trials; so safe sun will be fine for many reasons and seems to be working so enjoy it. I routinely test for Vit D in children, esp if darker skinned, and in the UK this usually returns insufficient, esp now at end of winter.”

For us the difference in Adam’s sensitivity is so very marked that we might need to think about moving somewhere with more daily sun than where we currently live (Bristol, UK).

Now that I think about it, this topic links well to another blog post I have in the pipeline about our current pediatric allergist and how limited his approach is to caring for Adam.  He hasn’t mentioned anything about vitamin D whatsoever and his approach is to basically deal with the symptoms of allergies with inhalers and antihistamines rather than to try and inform us about things like the sun link.

But for now, enjoy the sun, and see if it affects your child’s sensitivity!  Do drop a comment if you’ve seen any differences in your child’s reactions when you’ve been out in the sun or even if you’ve also considered moving somewhere more sunny as a result!

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