The lighter side of being an allergy mum: 10 things I now know

 I've been an 'allergy mum' for a little over 2 years, and in that time we've dealt with what feels like so much. However - and no one prepares you for this - it just keeps coming. Things to learn, to teach Harry to manage himself (and that's a whole post in itself), new allergens, attitudes of others - be they people who mean well, or people who just don't get it. And I don't think at that appointment on the 25th November 2014 I really understood that. It was such a relief to have a diagnosis that didn't involve me being a rubbish mum that it didn't cross my mind that this was something that was going to continue growing far, far beyond excluding dairy and soya from my diet. That sounds terrible doesn't it? But aside from supporting Guides with food allergies (which I always took seriously - but, as we oh so often joke, I get to give them back at 8.30pm) I had really had no idea of the road we were heading down.

Anyway, I thought today I'd post a slightly tongue in cheek view of what we've encountered and learned thus far...

1. Cutlery, crockery, glassware, sippy cups - HOW many do you go through? I've always been hot on food hygiene, but me and potential cross contamination are not friends. Everything gets washed in the dishwasher on the hot setting. Chopping boards, knives, wooden spoons and spatulas all head that way if I'm in the least bit unsure. Whilst most of what we have in the house is safe - M and I do have dairy ourselves, more often than not, when Harry's not around. With the exception of milk in tea that is, no alternative milk has ever managed to make a proper cuppa.

2. There is nothing more likely to have me demonstrate my (non existent) athleticism, hurdling chairs and toys at playgroup in a bid to remove a stray biscuit from Harry's line of sight. Not a drop of grace is present in any of my limbs as I fling myself between Harry and the offending objects. And while we're talking about that...

3. Food in soft play, playgrounds etc. How often I want to be wildly unreasonable, and remove biscuits, chocolate, pretty much anything gripped in another toddler's sweaty paws before they're allowed to smear or spread said item around the play area. I know it's unreasonable, I do, I really do. But sometimes it would be nice to just be able to relax a bit.

4. It's not just nut allergies! From our standpoint - schools, nurseries, playgroups etc... all 'get' nut allergies. Which is awesome. If you have a nut allergy. We don't. Add to which a non-instant, reaction and I feel a bit like my explanations are falling on deaf ears.

5. People don't always have just one one food allergy. Lady in the cafe it's great that you can cater for someone who has either a dairy, egg, soya, strawberry or sesame allergy. But we have them all, and you can't do that. Which is fine, but then let me give my son his packed lunch.

6. And while we're at it a gluten free option is fabulous - it's not the same as a dairy free one! Which is also not the same as a lactose free one, although I'll let you have that as they're so similar.

 7. There are some fabulous sources of calcium that aren't dairy based - but sardines and kale aren't up on Harry's favourite food lists - of course they aren't, why would they be?! So I spend hours on the internet, with recipe books, and pottering around in the kitchen trying to find palatable ways of hiding foods that will help him. It's not that he's a particularly fussy eater - he's just a toddler and if the day has a y in it, he'll find something different that's not being eaten today, despite being last week's food of choice. Peas, I'm looking at you.

8. The trials of allergy testing - in our PCT, until the age of 3, allergies are tested via so called 'Challenges' - you either try your child on something with a small amount of said allergen in, and build up to foods with greater quantities of that allergen. Basically, as a mother, I get to potentially give my child a food I spend most of the rest of my time avoiding for him, in order to challenge his allergy. There is little I enjoy less.

9. And I know I'm going to alienate a HUGE amount of people here, but some of those food writers- you know the ones, heavy on the use of buzzwords like wellness, clean eating, healthful and nourishing - who talk about intolerances because dairy makes them a bit bloated, or gluten is acidic, or sugar the devil... whatever the current default is. Those people make life SO hard for anyone with an actual food allergy by making them seem faddy and in turn making others take them less seriously. As soon as you see the heavenwards glance, the unsubtle eye roll, the sigh of despair when asking if there's soya in bread, it's time to leave. Because whilst you know it'll give your toddler eczema that bleeds through his pyjamas, projectile vomiting and nappies like something out of The Exorcist - that's not what people think of any more. And I know that some people have found a more balanced lifestyle following that kind of eating, but for us and so many families like us food allergies aren't about posting heavily edited photos of us doing headstands in the golden morning light. It's so that we don't see our child writhing in pain, we don't watch them come up in the hives that we're told can precede anaphylaxis, we don't want to have to prop their cot up so that the burning acid reflux stays in their tummy.

Well that one wasn't so lighthearted was it. Oops.

10. And the combination of pride, sadness and confidence when your toddler can say no to a biscuit because it might make him "poorly" or tells a friend he can't have "sova, mik, 'trawberries,egg" For me, that moment was at once heartbreaking and reassuring. And he can also now tell you that if Mummy gets bitten by a bee she needs her epi-pen.

And much like my post on 10 things I've learned in 21 months of breastfeeding, I couldn't just leave this at 10...

11. Having said all of the above - the utter joy at an evening on Pinterest discovering wonderful recipes (that you may or may not ever make) that are safe for your child is wonderful. The moments when you can tell that the allergen has finally left their system and finally breathe a sigh of relief. The weigh ins at the baby clinic when you're told that your tot has finally put on weight, or is finally tracking a centile line. The joy of finding a safe food or recipe that your child inhales. The relief when a mum from NCT or a playgroup leader goes out of their way to be inclusive and ensure there's a safe alternative to whatever food the other children are eating. There is a litany of small moments that as an allergy mum bring me joy, restore my faith in other people and make this whole journey we're on seem manageable, feel less isolating, and give me the confidence to keep on keeping on.

I'm adding this post to Free From Fridays this week, over at Le Coin de Mel

The reality of life with allergies: when, yes, a little does hurt

Sometimes I think that my online bright & breezy persona where it seems that Harry's allergies are entirely managed is somewhat disingenious.  For the most part they are, we have safe foods - which can be as specific as one brand of one product that doesn't cause a reaction, yet another will. We have safe places to eat if we're out and about. We have safe activities to do, and groups to go to. Yet, over the last couple of weeks I have fallen foul of my confidence (over confidence perhaps) in our lives.

Over the last month - 6 weeks or so, I've noticed the return of Harry's reflux; his sleep has been interrupted, he wakes early, and during the day you can hear it. Initially I put it down to the end of a virus, then a rotten cold, but the last few weeks have seen it getting worse. Then last Saturday we had a massive gastro-intestinal reaction and part of me broke. None of my carefully planned meals, recipes, dairy free spreads, cooking nearly everything from scratch and helicopter-like supervision had been enough and my baby was suffering from that.

Like any and all mums would, I blamed myself. I still do. I could have done better, kept him safer, been more vigilant. Only you know what? I don't think I could and this has been a massive learning experience for me. Harry is nearly 2 and a half, he's into EVERYTHING, as he should be. I don't wrap him in cotton wool or bubble wrap, I let him run, jump, explore, play and learn. And I strongly believe that's right, that I should, that he needs those experiences. I just wish, hope and pray that I can keep him safe.

We think we've identified one source of the reactions, the first being that our lovely volunteer at creche totally understood my explanation of "no milk, none whatsoever" but hadn't grasped, or I hadn't explained clearly that there is milk in biscuits, so my son had been gleefully inhaling a malted milk on a Friday morning. Of course he would - he's two and not allowed biscuits very often. It must have felt like Christmas! I'm not cross, it's just one of those things where people do misinterpret the severity of an allergy that doesn't cause anaphalyxis.  Whilst not the problem for us here, there is of course the perception that as the reaction is neither immediate, nor visual it's less serious and therefore a little won't hurt. It does. It really does.

The second reaction is proving harder to identify, I initially thought it was also biscuit related and that a product I'd thought to be dairy, egg and soya free was actually a may contain. But I checked with the brand and the recipe's not changed. So we've either been caught out by one of our 'safe' may contains - foods that themselves don't contain the allergen you're looking for, until they do. Until there's an incident of cross-contamination. Until their production line is changed. And my misplaced confidence  that they were safe then becomes just that. Misplaced. But, as we don't eat a great deal in the way of processed food, I can't actually identify what it might be. Which is leading us to the conclusion that it may, in fact be a new allergen. And at that point my heart fell. Is this what life is going to be? Every few years finding new allergens, while those around me tell me that 'he'll grow out of them by the time...' he starts nursery/ school/ university?

It's also raised for me the issue of nursery - it's less than a year until Harry gets his free hours, and I'd like to send him to nursery as a preparation for Reception. He's already a lovely, social boy, but I think the structure of a day or two in a nursery environment would be useful.  My years working in social care have meant that I sat down this morning and put together an Allergy focused One Page Profile. I've attached it as a Google document so you're welcome to download and use it yourself or share it with other friends or family that might find it useful. I'll certainly be sharing it with Guiding groups, as for volunteers who often don't get Allergy awareness training I suspect it'll be a useful resource. 

And now the reaction has reduced with 'just' the reflux remaining, it's time for me to stand up, dust myself down and carry on. I can't keep Harry at home with me all the time, and realistically I won't always be able to monitor everything he eats or drinks. Certainly if he doesn't grow out of his allergies I'm expecting a time when he'll challenge me on what he can and can't eat. But for now, with our recent experience fresh in my mind, I'm moving forwards with a renewed fervour that yes, a little does hurt. Be it one malted milk, one gingerbread man... it does, as we know only too well.

I'm adding this to #FreeFromFridays hosted this week by The Free From Farmhouse