Tuesday, October 20, 2015

What its like being an allergy mum

When I was pregnant I never imagined I'd have a child with allergies. I knew I'd be apprehensive when trying peanuts for the first time given so many kids react, but other than that I never really considered allergies would be a problem. The only allergies I knew of in our family are seafood based and I figured the baby wouldn't be eating seafood for a few years anyway so that never really concerned me.

What I never, ever imagined was that I'd have a daughter who has a severe dairy allergy. An allergy that wasn't diagnosed for weeks despite my constant trips to the drs pleading with them for help because I knew something wasn't right. An allergy that caused her to scream inconsolably for hours on end. One that caused her skin to be flaky and dry and over time develop an extreme eczema rash covering half her body. An allergy that caused her to projectile vomit repeatedly after every feed. An allergy that even caused her to stop breathing on a couple of {extremely scary} occasions.

But that's exactly the reality I find myself in. I'm an allergy mum. And its not just dairy, she's also allergic to numerous other foods {soy, eggs, avocado, apple, pear, nectarine, bacon, pork and sausages to be exact, and probably a bunch of other foods we're yet to try}. On the whole I have to say having a child with food allergies sucks {for so many reasons}. People often dismiss allergy mums as hypochondriac helicopter mums who overreact, but trust me that's not the case. To others we may seem to be over protective, but in reality we're just trying to keep our kids safe like every other parent, we just have to work a little harder to do that. There seem to be a number of misconceptions out there so I thought I'd give you a glimpse into what life's like with a child who has food allergies.


I'm always worrying if she's going to have a reaction.
Trialling new foods with an allergy bub isn't fun and exciting like it should be. Its nerve racking. She's had different types of reactions to each food she has an allergy to, some are mild and she probably doesn't even notice them, but others are quite painful and can become life threatening. Reactions include hives, welts, chemical burns in her nappy, swelling, vomiting, and in some cases she can stop breathing. It means I'm constantly living on high alert. I'd love to be able to give her a new food and not have to second guess whether its going to cause a reaction, but that will never be a reality for us.

I always have to monitor what she's eating.
When she was a baby controlling her food intake was relatively easy because a) she couldn't move and b) I was her only source of food. Now that she's bigger, mobile and can talk {read: can try and con other people into giving her food she wants} its a lot harder. I have to watch her like a hawk whenever she's around other kids with food. 

Telling a toddler they can't eat certain food is hard.
Most parents have to explain to their kids that they can't have certain foods at some point, i.e. no you can't have ice-cream for breakfast, but I have to do it on a daily basis and not just regarding junk food. I have to say no to the most basic of foods, like apple juice and biscuits, things other toddlers eat every day. There are often tantrums. She doesn't understand why her friends can have certain foods and she can't, but thankfully most of the time she accepts it. But it breaks my heart that she can't eat the same food as her friends.

I make her food from scratch.
I was going to make most of her food from scratch anyway so in reality having to do this hasn't made a huge difference in our lives. However, having to do it, rather than choosing to do it, sometimes does leave me a bit exhausted. Making her food is not as simple as grabbing a few things and throwing something together, it involves scouring the health food aisle to find the limited number of items I can actually use to bake with. It has to be pre-planned to ensure I have the necessary substitutes on hand. There have been so many times I wish I could just buy a packet of biscuits, or muffins instead of needing to bake for her to have snacks. I'd also love to be able to take her to a restaurant and order her a meal off the menu instead of having to make her food and take it along with us {then hope we don't get in trouble for bringing it and not paying for something off the menu}.

I'm an expert at reading ingredient lists.
Although I make the majority of her food from scratch, there's still times where I need to read ingredient lists on foods to make sure they're ok. For example when finding substitutes to use in cooking {like nuttelex, bio cheese and coconut yoghurt}, or when other mums offer her packet food. Years ago I never really looked at ingredient lists when buying food, I just bought what tasted good, as most people do. Now, I'm a ninja when it comes to deciphering ingredient lists, I can spot even the smallest amount of hidden soy or milk.

Birthday parties aren't as fun.
Nothing sends an allergy mum into a panic quite like the words birthday party. I don't expect other parents to cater for her dietary needs when organising their party, that's not fair on them, but it does mean that she's not really left with many options when it comes to eating food at parties. I wish she could just go to a party, eat all the food and have fun like all the other kids.

I can't send her to day-care.
Ok so technically I could send her to day-care if I could find one which would cater to her allergies {which is hard enough in itself}. However, after hearing first hand of how kids sometimes drink each others bottles by accident at day-care, there's no way I'm risking my child ending up drinking milk {even if its completely by accident}. If that was ever to occur her choking is silent and deadly and unless a carer was literally watching her face to face there's no way they'd even know she couldn't breathe. Given the ratio of carers to children in most child care centres I know she won't be watched face to face 100% of the time so the risk that something could go wrong {as minute as it may be}, is one that I can't take. I would never forgive myself if something happened to her.

Some people are just down right ignorant.
I get that people don't understand food allergies and that's fair enough because I didn't have a huge grasp on them before either, but some people actually dismiss her food allergies {because apparently everything the paediatrician has told me is wrong and they know better}. I've also had lectures from people {who aren't drs and clearly have no understanding of cmpa} telling me all sorts of different things that I should do to make her right "oh she's allergic to dairy, just give her lactose free stuff, she can have the lactose free yoghurt and milk she'll be fine". Actually she won't because she's allergic to dairy protein, not lactose and she'd probably stop breathing if you gave her any of that. The truth is none of their {hopefully well meaning} advice would have any affect on her allergies other than to exacerbate them and cause reactions. In the beginning I used to try and educate them, but it soon became clear these people think they know my daughter and her allergies better than I do, so instead of correcting them, I usually just allow them to say their piece and thank them for their advice and move on {while making a mental note to never leave my child alone in their care}.

In a way I understand why allergy mums come across as helicopter mums to other parents. From the outside it probably does seem like we're overly paranoid and coddle our children, but trust me it comes from a very necessary place. The truth is you can't really understand what it's like to care for a child with food allergies until you have to do it yourself. Unless it's your own child who has the potential to have a life threatening reaction you'll never truly understand the enormity of it. You just can't, but hopefully this has given you a glimpse into what its like. And hopefully you can now see we're not crazy helicopter mums, we just don't want to lose our precious babies.

Toni x

Linking with Jess

20 comments:

  1. I have two kids with lactose intolerance and myself I have a dairy allergy. Not one so severe that I would ever stop breathing, but it does cause me a lot of trouble. Coupled with these allergies, my son has some behavior issues that we manage with a very strict diet. I find it so difficult to explain to people, even my ex husband/my sons father wont help and follow my sons diet, it makes it tough. But the benefits of making everything from scratch are that we are all healthier and happier for it.

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    1. Yea its so hard to explain to a lot of people because they just can't imagine what its like. The big plus side of having to make everything from scratch is that I can cut out all the crap and we're all eating healthier because of it too.

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  2. Far out Toni, such a long list of things, poor bub. And poor you! We struggle sometimes just avoiding dairy and soy. Birthday parties are the worst!

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    1. I haven't given her any new foods for a while because I'm worried it'll just add a new thing to our list :(
      I tried to re-introduce avocado in the last week, but after the tiniest bit she ended up with burns and blisters on her bum, poor thing. Sometimes I just wish she could be like other kids so she didn't have to go through all this.

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  3. It would make life so complicated but what choice do you have really? It must be so hard. Hopefully it's something that she will grow out of. Unfortunately, I think some people still don't take allergies seriously. I would never underestimate the dangers of an allergy knowing how some foods create an immediate asthma attack for me. Thank God none of my kids inherited it.

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    1. I really hope {for her sake} she grows out of it, but they've said she'll probably be closer to 5 if she does so we probably have a while of it left, but who knows really. Like you said we don't really have a choice so we'll just deal with whatever happens. Unfortunately there are so many people who don't take allergies seriously and that's what scares me.

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  4. Wow, I feel for you Toni - that sounds like a lot of extra worry and work, but there's no alternative, you just have to do what you have to do to keep your bubba safe, right? And people can be so blase about these things, not really knowing the score. That's one of the hardest things about parenting all round, I think - that everyone's got an opinion and most people will never see your point of view!!
    My bubba is allergy-free except I think he has some issues with normal milk (we have to do A2 or the nappy rash is like burns, it's off the charts). My nephew however has experienced very bad allergies so I know that birthday parties can be a nightmare. My nephew is still young but very accepting of what he can / can't have now.

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    1. His reaction to milk sounds like bub's reaction to avocado, she gets serious chemical burns on her bum as soon as she does a poo {and sometimes they blister}. You're definitely right that everyone has an opinion on everything when it comes to parenting!

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  5. Ahh the poor wee thing and poor you. It's very scary with her allergies that bad. Perhaps when she's older and knows what she can and can't drink and eat, you could send her to day care then? I'm sure you'll continue to manage it the amazing way that you do.

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    1. I'm hoping once she's old enough to understand it better that I'll be able to put her in day care at least for one or two days a week. I think she'll be pretty good with it once she's talking a lot more and understands that certain foods can hurt her if she eats them.

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  6. Wow that is intense Toni !! . Sounds like you do an amazing Job to stay on top. A huge amount of work and worry for you. Is there any chance she may grow out of some of these allergies ? I feel for you. You have written this post so well.

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    1. They've told us most kids grow out of them by 2, but because hers are quite severe she'll most likely be closer to 5, or could end up having them for life. I've tried re-introducing a few things to see if she still reacts and her reactions have been just as bad as they were before so I don't think she's anywhere near growing out of any of them yet. Although I have been able to introduce a teeny bit of ham lately which is promising given she's reacted so badly to bacon in the past.

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  7. Oh! Allergies are dangerous when taken for granted. Most people don't know its complications that's why they think we just over react.

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    1. Yep, there are so many people who don't take them seriously :(

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  8. A close friend of mine came to Bali with us a couple of months ago and her eldest son (8yrs old) has an already to nuts and eggs. I was so nervous as Bali is not like here and they do not have the same understanding as we do. But my fear was soon gone. They had everything organised and I was so proud of how everyone handled it. As kids get older, their allergies may not go but things do get easier.

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    1. I'm hoping she'll be pretty good at handling it once she gets older. Its all she's ever known so hopefully it'll get easier for her to accept even though her friends can eat other foods. I'd be too scared to go to Bali, they did well.

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    2. Hi Nat, my boy has severe allergies to nuts and when we went to Bali 2 years ago, he also had allergies to egg. All the restaurants we ate at and all the hotels we stayed at were all very good at catering to our needs. Everyone there has a pretty sound understanding of food intolerances and allergies. It's like dealing with any restaurant or hotel here in Australia - you just make sure you tell the staff right from the beginning what your situation is.

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    3. Good to know Grace. Makes me feel a bit better about travelling overseas :)

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  9. Oh Toni, I feel for you. My boy has severe peanut allergies and no, birthday parties aren't so much fun. K-Bear is a little older and we're starting to teach him to always ask if a certain food that he's been offered has peanuts. He's getting very good at it.

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    1. I've been too scared to try peanuts here because I'm paranoid with all her other allergies she'll have a peanut allergy too. He's so good learning to ask himself. We'll have to teach bub to do the same thing with milk and eggs.

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