Allergy fun…..when all the best plans…

This weekend we had the total privilege of witnessing the marriage of one of my longest standing friends. It was an amazing weekend, but that kind of event for us always comes with a few stresses.

Our friends were amazing in their catering planning for the weekend, providing lots of food for me to eat with my allergies, and lots for my eldest son too. We had agreed in advance we would provide the food for the toddler, as we know it is hard to cater for all his allergies.

So with all the best laid plans, there also comes for me a level of anxiety as to the what-ifs that can happen. And we survived the first 24 hours without a hiccup. But with 21 other people around, who are aware to a point, there is always going to be a degree of risk. With a mobile toddler though, you at times need eyes in the back of your head!

We don’t know what, or when, our little guy picked up something he shouldn’t  have, but somehow he ate something he was severely allergic to. An unhappy, itchy baby was bad enough, but the sickness that followed was on another level. I was so grateful for the help of new, but wonderful friends, who jumped up to help so we could sort out a very unhappy little boy.  As ever what amazed me was once his system had rid itself of the allergen, and he was cleaned up, out little boy was back to his happy, chatty self! He tucked in to more, safe, food, and merrily chatted away to people.

We will never know what he ate, if it was a known allergen, or a new one, and that makes it tricky, but what I am learning is that we can only do so much. There will always be a time when there can be errors and slip ups. We try to minimise the risk as much as we can, but we also want our little boy to enjoy life and have as many similar experiences as other children as he can. But we will also spend time raising awareness with others about the dangers of allergies.

No, he currently doesn’t have an epi pen – as currently all his known allergies are non-IGE. But that doesn’t mean one day his allergies won’t become IGE and result in anaphylaxis. It also doesn’t mean that even a small bit is ok. Too many times we have heard people say, “well a small bit can’t hurt can it?” The answer is yes, a small bit can do a huge amount of damage to his gut. As an example, testing mackerel – just a teaspoon of it – resulted in 4 weeks of his tummy being unable to hold any food!

Things are not going to be easy for a potentially long while. I will permanently be grateful to our child minder, who provides him with a safe environment which he adores. To friends who help us have safe play experiences. People who will have him to stay and even provide him with food, which is not always the cheapest or most straight forward option.

Living with allergies and living with a child with allergies isn’t easy, but it is what it is. What I am learning on this journey, is that I need to stop letting people make me feel like it is an inconvenience,but it is ok to be honest and say it is a problem.

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Allergies can be isolating & apparently inconvenient!

allergy

This image says a lot. It says how it feels to be the mum of a 5 month old baby with 6 known allergens, without even starting on food. The outline at the end highlights how I feel about introducing food to my baby. It honestly terrifies me!

But what this image doesn’t show is some of the isolation that comes as part of the allergies. Picnics in the park are only going to be possible on days when the pollen count is low, and even then I will be armed with antihistamine plus other bits we use to help keep the pollen at bay. If I don’t, then I will have a very uncomfortable little boy, with scratch marks all over his face as he scratches in response to the pollen irritating his skin, his eyes and his head. Even sitting in our own garden, which soon will have no plants or real grass in it, can cause reactions and we don’t know what to. It’s isolating as it is hard for us to leave him to go out. At the moment the allergens are so unknown leaving him with someone else is hard.

The isolation from conversations I can’t join in because “weaning” is going to be a very different process for us. All foods have to be introduced for a skin reaction and then an internal reaction before a spoonful can be tried.

Having to avoid key ingredients in food for the foreseeable future adds the problem of where we can go and eat. Using jars and pouches of preprepared baby food are not an option. Everything will have to be homemade until we have established what foods are also allergens.

Some people have made comments where you can see they don’t understand the implications. Yes a small amount of dairy can make my baby really ill. His contact reactions to some products like fabric conditioner are so severe the GP did an urgent allergy clinic referral. If he doesn’t have regular antihistamine when the pollen count is high then he struggles to breathe at night.

I’ve been told that his allergies are “inconvenient”. Yes they are….for him! They will be as he grows older too if he doesn’t outgrow them. Being allergic to sorbitol is probably one of the most “inconvenient”. Having to read the back of everything you buy to check the ingredients. It’s not a key allergen so it isn’t in bold like dairy or gluten products. It also occurs in things you wouldn’t realise, including toothpaste and shower gel!

It’s inconvenient that I can’t just pick things up from the shelves like every other parent. It’s inconvenient that I have to pay 2 to 3 times as much for products I have to buy – £5 for a tube of toothpaste! It’s inconvenient that I will spend an extra half hour or so on each shopping trip reading ingredients. It’s inconvenient that I have no quick wins on the first stages of eating. It’s inconvenient to have to go to various clinic appointments at the hospital as we try to understand all of the allergies and how best to treat them. So yes it is inconvenient for my baby and for me. Am I going to apologise if he is going to react to what someone else has on their clothes, or if I “over react” to him coming in to contact with a new substance or a known allergen…? No, I’m not. I will keep protecting him because I also see the consequences.

So yes it can be isolating. It is incredibly hard work to juggle at times. But it is who my baby is and I just have to deal with it daily.