Sunday, 30 October 2016

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

FreeFromFarmhouse

12 comments:

Nikki said...

I hope your boy feels better soon. its so hard when you have a flare up and cant pinpoint the source!

Nikki | www.sparklesatmidnight.com

Kate@whatkatebaked said...

Aww goodness it sounds like you've all had a really tough time of it, I hope Harry's reflux improves soon. My daughter is now 15 months and similarly into most things- the hardest thing I'm finding is when other toddlers are eating food she can't have and is allergic too, and she just can't understand why and gets ever so sad and upset.

Tiggy Poes and Flutterbys said...

Gosh, I can't begin to imagine how difficult this must be for you, he hope everything settles down again soon :)

Cattitude & Co. said...

Allergies are a pain, fortunately mine aren't bad. I can't imagine what it's like for a kid!

Anosa Malanga said...

Awww bless the little man and hopefully his reflux improves real soon. I don't know much about allergies but i know my siblings and mum suffer from allergies

Jess | The Indigo Hours said...

Oh gosh, this sounds so hard for you all! It can be so tricky getting people to understand that just because they can't see the reaction, it's still important to avoid triggers... Hope Harry is feeling better soon!

Jess xo | The Indigo Hours

Anca said...

It's a shame he is not feeling well. It's hard for people without allergies to understand, it's something they can't relate to.

Melanies Fab Finds said...

Oh dear it's not always easy to identify the cause of the allergy, hope it's sorted soon and little one feels better x

Ali - We Made This Life said...

Allergies are the worst aren't they :-( My daughter gets really bad reflux reactions from dairy but she won't not eat it (she's 9). it's so difficult. I hope your little boy grows out of it.

Gigglesinloveable said...

I can't even imagine was libong woth alergies is like, I am incredibly lucky that none of us do. I do hope your little one grows out of it x

Le Coin de Mel said...

Oh Penny... I feel like saying "Don't blame yourself!" but I know exactly how you feel: every single time Jumpy has reacted to something or other, I have felt responsible (am I too relaxed? Did I let her touch that?). We also have 'safe' may contain snacks. If we were not, she would not be able to have her favourite Organix treats. Life with allergies is tough. Poor little mite... Thinking of you. x Thanks for joining in with #FreeFromFridays

Crystal Gareau said...

I'm so sorry to hear that he wasn't feel great.

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