Allergies take 3! (and more!!)

Check out KFA's _22 Things We With You Could Understand About Food Allergies__

People asked when I was pregnant, what was the chance of the baby having the same allergies as my toddler. It really was 50/50. 2 weeks in, and we already had the first bit of the answer….3 out of 3 children had CMPA. A dairy allergy. In a space of 6 hours I watched my contented baby turn into a miserable, writhing in pain little girl, producing nappies that were not “normal”.

I was so grateful that I had a supportive Health Visitor, who straight away put  my daughter on to the NHS allergy pathway, with a referral to the dietitian, and we made an instant appointment with the GP.

But one thing we didn’t know was how severe her allergy to cows milk protein was, or whether it would be her only allergy. What we did know was that this meant that weaning was going to have to be the allergy led method again. Following on from dietitian advice, we started with our son’s known “safe” foods, trying to build up a base of foods, before testing some of his allergens.

I’ll never forget the day I went for the first of his known allergens. I was nervous. Knowing that this could cause my daughter pain or worse, was not a great feeling. But I had to do it. We were lucky. The first one we tried was apple, and all was ok! Phew! And we tried that because it is added to so much that it was a bonus if she could have it. Maybe I then thought it wouldn’t be so bad or my mind just thought lets go for it, but I then tried another allergen. This time it was one where my son was allergic to  a whole food “family”. The first time seemed ok, so we went on for attempt 2. That night, we did not get much sleep. She was so unhappy. In pain, drawing her legs up, crying, unsettled. We thought it was the sweet potato, but to be sure, we had to try again a week or so later. And yes, it happened again. One little girl, very unhappy. And so her allergen list started.

What we have found is that when she has gut based reactions, they are generally more severe than her brother’s. For example, she can’t tolerate even medical grade coconut products, but her brother can. She can’t tolerate any fish we have tried, her brother can tolerate white fish but not oily fish. She can’t even cope with peppercorns or ground pepper from the nightshade family, he can cope with a little.

But we’ve also got a little girl that doesn’t like to have lumps in her food. After 3 months of introducing food, she will finally have a bit of texture, but this has been an additional challenge. The dietitian recommended focusing on textures over new foods, as this was more important, so the introduction of new foods has gone on hold. We’ve got many more things to try.

So it’s actually been trickier this time round. We don’t have all the answers for our daughter yet and we don’t know if it will be worse than our son or better. But we know it’s currently a very similar path. If we go away, even for 1 night, we take 2 bottles of antihistamines, 2 inhalers, snacks and milk for both children, probiotics to help their guts. The list goes on. Currently there is no epi pen in the kit, but that doesn’t mean their won’t ever be. I’m just grateful that neither has had a reaction that needs one.

So, life as an allergy mum continues. And the one thing I am grateful for is the fact that if nothing else I can be a support to others who are journey some of a similar path.

Check out KFA's _22 Things We With You Could Understand About Food Allergies__ (1)

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Food aversions….another thing to juggle,and small steps are big achievements

I’ve talked a lot about the challenges involved with a child multiple allergies.  We are still very grateful that so far almost all are gut reactions, and there is only one that is looking like an IGE reaction. But we are still at a place where our little boy only has 25 foods that we know are safe. But in the last 4-6 months we’ve encountered a whole new game….. food aversion! 

Food aversion is different to being a picky eater.  It’s refusing to eat whole food groups or refusing to eat any food apart from very specific foods.  In our case it started as a refusal to eat anything that required chewing after a period of being ill.  It then also embraced refusing most vegetables and only wanting Ham and cucumber! Tough enough for a child with a varied diet, but trickier with such a limited diet.  

I must admit I am very grateful for our very supportive and understanding dietician.She talked through some good basic ground rules, and gave us some helpful literature. Learning not to make food a battle from early on has been really important. We’ve learnt to give him some closed choices on what he can eat. We’ve made eating about family time sitting together, and we’ve made it fun. But it is hard when you have a child refusing to eat. Even more so when you know every 6 months a health professional is checking his height and weight to make sure it’s all on target (whatever target means??? ) 

We became more reliant on the prescription formula,which still accounts for up to half of his daily calories. We’ve delayed taking a bottle away,as we know he needs to take the formula,even though we know for dental development we need to be moving away from a bottle. We’re having to choose our battles. 
In the last couple of months,and more so the last couple of weeks, we’re seeing big steps forward. New textures aren’t being rejected! We’ve successfully managed to introduce some new snacks that he will not only try, but devour! Things that just mean we can buy a few more things rather than have to make them from scratch! These for us are huge leaps forward! I never knew a little boy’s willingness to eat a pom bear would make me so happy!! 

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.