Food Allergy Awareness Week with Dilan and Me

This week is food allergy awareness week. Over the next five days, I’ll be handing over my blog to parents whose children suffer from allergies in a bid to raise awareness and eliminate any associated misconceptions. 

This week is food allergy awareness week. Over the next five days, I’ll be handing over my blog to parents whose children suffer from allergies in a bid to raise awareness and eliminate any associated misconceptions. 

I’m Lauren, and I have a lovely four year old little boy called Dilan. I blog over at Dilan and Me all about motherhood, adventuring and food allergies (specifically CMPA – cow’s milk protein allergy ). I gave up dairy & soya for two years to continue to breastfeed Dil after he was diagnosed with CMPA, and now I spend a lot of time supporting mums who are in the position I was. You will usually find me in my Facebook support group for mums breastfeeding with CMPA or scrolling through Instagram.

1. Who suffers from allergies in your family, when were they diagnosed and what allergies do they have? 

So my little boy Dilan has Cows milk protein and soya allergies. He was diagnosed at 6 months old, after a long time of not really knowing what was wrong with him. I gave up the allergens too so that I could carry on breastfeeding him, so I was dairy and soya free until he self weaned at 2. He’s now 4 and a half so we’ve been doing this dairy free thing for 4 years!

2. How long was the process of diagnosis, tell us about your experience?

For us the diagnosis took a long time, and I constantly hear from people with similar stories to ours. Dilan was always a ‘sicky’ baby, and we would leave puddles of milky sick wherever we would go. He was often crying or unhappy and was usually either feeding, crying or asleep. As a first time mum, it was really hard to know how much of this was ‘normal’ and how much was an indication that something else was going on. At about 3 months his weight gain stopped, he fell to below the 2nd centile on his chart and he was labelled as “failure to thrive”. Our GP and health visitor both just shrugged, no one really knew what was wrong. We were referred to a dietician and paediatrician but as with a lot of departments, the waiting list was incredibly long.

Alongside this, my close friend had just got a CMPA diagnosis for her son who is a day younger than Dilan. He was prescribed a new dairy free formula and there was a huge improvement immediately. His symptoms were completely different from Dilan’s (which is what often makes CMPA hard to diagnose), but the more she read about it the more she thought it could explain Dilan’s symptoms too.

I was fairly sceptical of the allergy thing until we began baby led weaning. One night I popped him into his highchair and gave him a little of my chicken pasta to play with while I ate my own. He smeared the food around as most babies do and got it all over his face. The next time I looked up I could see huge red hives covering his cheeks, where the cream sauce had touched. In a panic I called 111 who agreed it indicated a serious dairy allergy. We were really lucky that he didn’t manage to actually consume any of it.

After that incident, we both went dairy free immediately. My friend had learnt from her research that it’s common for CMPA babies to also react to soya, so we gave that up to. Within a week the sickness had completely stopped, and within a few weeks, his weight gain began to skyrocket again. At the request of our dietitian, we trialled soya products, which resulted in another 9 days of sickness and a confirmation of the soya allergy too.

3. How do these allergies affect you and your families on a day to day basis?

In the beginning, we all found it really tough. It was overwhelming to suddenly have to learn how to read ingredients and find safe foods, and really we were very much on our own and doing it will little support. Eating out was terrifying, having to put your trust into someone else to not poison your son. Once Dil got a little older and began to crawl and walk things were even tougher because you had to constantly be on high alert to stop him from getting hold of something dangerous. Visiting other people’s houses, birthday parties and soft plays were the things I dreaded the most.

Nowadays we’ve got it all pretty sussed and for the most part, it’s pretty easy. I can read the ingredients list of anything and determine whether it’s safe or not within about 4 seconds, and so can all our close family and friends. We have lots of ‘safe’ places that we go frequently because I know I won’t have to worry, and our friends and family have all got the hang of it now. We are really lucky to have such great people around us, who have always gone out of their way to make sure Dil’s never feels left out.

When we first embarked on our allergy journey I was very determined to never let it mean Dil misses out or feels different in any way, and so far we’ve never allowed that to happen. It’s a normal part of our day to day life, but that doesn’t mean it’s particularly difficult or a really big deal.

4. Have your child’s allergies impacted your travel, if so how? 

Travelling with food allergies can be a really scary thing, mainly I think due to the unknown. It’s hard to go somewhere not knowing what kind of safe alternatives there will be, not knowing if you’ll be able to find the things you usually have and not even knowing if you’ll be able to properly communicate with the people preparing your child’s food. We have travelled within the UK a lot, and I always go overboard with taking our own safe snacks and alternatives but usually, I’m always pleasantly surprised by how much safe stuff we find there. Places like Centre Parcs and Bluestone are great with allergies.

Outside of the UK, things are a little harder, especially with language barriers. We visited family in Cyprus when Dilan was 18 months old and it was pretty hard at times. Luckily we had created our own allergy warning cards – just business card sized things which I had laminated. The detailed Dil’s allergies in Turkish and hopefully got across the severity of the situation too. Remember that anywhere within the EU is subject to the same allergen legislation as the UK, so anywhere selling food is legally obliged to provide information about the top 14. I have written some more tips on travelling with food allergies over on my blog.

5. If your child is old enough, do they understand their allergies? If not, how do you plan to explain it to them in the future? 

As Dilan is 4 he does have a really good understanding of his allergies and what he can and can’t eat. It makes me sad that he has to even think about this kind of stuff, but for him, it has always been this way. He knows that eating dairy or soya can make him poorly and if anyone gives him anything he will always ask if it is dairy and soya free. If a child tries to give him something he will always come ask me before taking one, which is great because that’s exactly what I need him to do. He started at a forest school last year and when I came back to pick him up from his settling in session I overheard him asking if the oranges were dairy free. He’s brilliant, and really has a good grasp on the whole thing.

A while ago I told Dil that I really hoped that he wouldn’t be allergic to dairy forever (most children do outgrow it) and that one day he could eat whatever he wanted. He told me that he really likes his allergies, and he’s very happy with the way things are, so that made me feel pretty good!

6. Do you feel that people are understanding of your child’s allergies? If not, why do you think this is?

We are genuinely so lucky because all the people around us are brilliant with Dil’s food allergies. I know that it’s not the same for a lot of people though, and I speak to a lot of mums who really struggle to get their family and friends to understand. I do believe that until you’ve been through it yourself it can be a really hard thing to grasp, but some of the things said to parents of children with allergies still baffles me. I made a video last year about all the things allergy parents are sick of hearing and it went viral, I guess because so many people could relate.

7. Are there any resources or websites which you’ve found particularly helpful?

When we first went dairy free 4 years ago there really wasn’t a whole lot of help and support out there. The knowledge I’ve built up has come from doing a whole lot of googling and reading, as well as learning from other mums who’ve experienced this too. This is why I created my own Facebook support group, and why I create my own resources for mums breastfeeding children with CMPA. It started out as a list on my phone, keeping track of all those ‘accidentally dairy free’ treats for us mums to eat. Once I started blogging I was able to transfer that to a webpage, and now I build it on all the time with more helpful resources for parents, including the dairy and soya free treat list, how to diagnose CMPA , breastfeeding with CMPA FAQs, tips for eating out with food allergies and loads more.

8. What advice would you give to any parent whose child has just been diagnosed with an allergy?

The first thing I tell all parents is to try to relax. Yes, it absolutely feels incredibly overwhelming and life-changing, sometimes it can be really upsetting to think about how ‘different’ your child might be. But actually, once you’ve sat down, done a little reading, and found some other parents who really get what you’re going through you will start to feel a lot better. Just like anything new, there is a huge learning curve to go through but once you’ve got the hang of it then it truly does become second nature. Plus it really isn’t all bad, there are loads of things that don’t suck about going dairy free.

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It’s Food Allergy Awareness week from 13-19th May. Make sure you pop back for more Q&A’s! 

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