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.
Hi, I’m Rebecca and I’m first time Mummy to ‘J’. I’m an Early Years Professional and have worked in preschools, holiday clubs, special needs provisions and even a prison crèche. I started to write my blog as a way to get the thoughts and muddles out of my head. Being a Mummy to a child with additional needs can be difficult emotionally as well as in more everyday ways. I guess I really just wanted to let others in our situations know that they aren’t alone.
1. Who suffers from allergies in your family, when were they diagnosed and what allergies do they have?
In our household, there are two of us with allergies. I have an allergy to apple flavourings (something about it makes me sick, swell up, rashy and huge stomach cramps) and hayfever. Both are a lot milder now I’m an adult thankfully. J has an allergy to cows milk protein (CMPA) in 2015, and peanuts end of 2015, as well as intolerances to kiwis and prawns (not found out until 2016/2017). J also has hayfever which affects him quite badly and brings out his eczema and his asthma.
2. How long was the process of diagnosis, tell us about your experience?
J was a poorly baby from the start really. We had so much difficulty feeding him. He wouldn’t take to breastfeeding and had trouble drinking any milk as he just didn’t seem interested. At a few days old we found J had jaundice and needed to have light treatment. This really helped and he began to drink. Like he had suddenly woken up and thought ‘ohh that’s what I’m meant to do with it’. However, we quickly noticed he was poorly after every feed. He would be sick and have poorly tummy. He started to become rashy and coughing, and I became worried. The doctors said multiple reasons…colic, reflux, indigestion. Each time I mentioned allergies I was dismissed as a paranoid first-time mum. It wasn’t until 10 weeks old when I became much firmer with the doctors and they agreed to trial him on some allergy formula. J went on Nutramigen. It took a couple of days but there were improvements. He wasn’t as sick, wasn’t as uncomfortable and wasn’t as rashy but it was still there. Thankfully we then had our appointment with the dietician at the hospital. Based on the reaction we described they decided that J was allergic to both cows milk protein and soya. This meant we had to change his formula to one that was free of both. It was another brand of Nutramigen and he took to it amazingly well.
Everything disappeared. All the symptoms and he was a much more content baby. He fed well, gained weight nicely and everything ticked along. We went for his review when he was about a year old and they tested him for other allergies. The test was designed to show strong allergic reactions such as ones resulting in anaphylaxis. J passed all the skin tests including soya and so he was ready to start introducing it back into his system. He was also given a peanut-based crisp to eat. At first, all seemed well, but on the walk back to the car J’s face went bright red and the rash just popped up out of nowhere. So, we were sent for an allergy trial. At the trial, he reacted again, and again so it was agreed that he has a mild allergy. He will get sick, diarrhoea, rashy and have a sticky sounding cough but not anaphylaxis (although we were warned that he may become more serious later in life). So the new plan was to reintroduce soya, join the ‘milk ladder’ and introduce small amounts of peanut crisps to build tolerance.
3. How do these allergies affect you and your families on a day to day basis?
Pre-weaning the CMPA was easy once we had the right formula. There was no issue as that was the only thing he could drink. The difficulties surfaced once we reached weaning stage. We had to find recipes that were milk free or we could substitute with his formula (although the taste was pretty foul so I made separate batches for us). Once I learnt all the different names for milk I quickly became a pro at picking out ingredients for meals. It was easier to cook my own and only brought very particular jarred foods when needed for outings or nights I couldn’t cook. We fell into a routine of what we ate and were happy with this. Once we started the milk reintroduction ladder that was a whole new level of difficulty. We had a very specific plan to follow and each step of the ladder would bring about big reactions that really bothered J. It was heart-wrenching but slowly he started to tolerate small amounts of cooked milk products. This took until he was almost 3! It was agreed by the dietician that we had reached our limit so J still can’t eat uncooked products such as yoghurt, cheese and actual milk.
Peanuts were also relatively easy. We followed the reintroduction for a few weeks but it clashed with the milk reintroduction and was causing a lot of distress to J. So it was agreed to put that on hold and just avoid peanuts. It’s a lot clearer on packaging and easy to avoid in foods. The difficulty we have is when we were eating out, or sometimes just going out in general. You can’t control what people have touched the trolley, what utensils have touched food etc and we often had random reactions from cross contamination. We make sure we carry Piriton with us everywhere now.
4. Have your child’s allergies impacted your travel, if so how?
Thankfully the allergies haven’t stopped us from travelling and going out. It takes a lot more vigilance and planning but is very much ‘do-able’. When eating out I try to google the menu before we go so I can plan what to order. Now that J is older and his autism has restricted his diet in other ways, he pretty lives on sausage or chicken nuggets and chips when we eat out. I do have to make sure that I explain clearly when ordering that there is to be no sauces, no ice cream with puddings etc but that’s about it. I pack a lot of snacks myself so I know that there are safe foods for J at parties, outings and holidays.
When J was 18 months old we travelled to the Canary Islands. I was really anxious about how we would deal with this abroad. I got a letter from the doctor confirming the use of the Nutramigen formula and again packed snacks in sealed boxes. I took enough pouches to last for the whole holiday and spares just in case. I have heard of families who order the milk to be delivered to Boots at the airport so they can collect it after they’ve been through security so this is another option for others. I made sure we had Piriton and J’s inhalers so if there were any difficulties with his allergies we were prepared. We had a brilliant time and J loved it. We made his formula up using bottled water that we boiled in the kettle in our hotel room. There was a fridge if needed too.
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?
J is now approaching 3 and a half. He is at the age where he can understand some things but not the true meaning of it. I explain that some foods make him have a poorly tummy and can make him spotty. He understands this so when I tell him he can’t eat something he’s fine with it. Again, with his autism meaning he only eats certain textures, it’s been pretty easy to avoid milk products. As he grows up and starts to go to parties without me I will make sure that I let the parents of the party know what he can’t eat. Thankfully none of his allergies are life-threatening at this point, so if he accidentally eats something it’s not the end of the world. It can just be uncomfortable for the poor boy and will result in toilet troubles! When J starts to go out on his own I will make sure that he is aware of what he can/can’t eat and to recognise the signs that he may have touched or eaten something that has made him react. Hopefully, he won’t be ‘too cool’ to carry his medicine around with him…else I’ll be following him in my car with a bag full, haha.
6. Do you feel that people are understanding of your child’s allergies? If not, why do you think this is?
In all honesty it is often family who have struggled to understand J’s allergies. I think that at first they thought I was being a bit ‘precious’. I had friends who told me that because J didn’t have an epi-pen it wasn’t a ‘real allergy’. I can assure you it is! I even showed them the diagnosis letters that I received. Most saw it as a learning curve and were really helpful. Others still didn’t seem to crasp it and I had to be very watchful as some family members would say ‘oh have a little taste’. Sometimes people would jokingly offer him something with cheese in it…and then wonder why I got so cross and anxious. It was never taken seriously by some. As to why some people react like this, I don’t know. Maybe because they haven’t been through it themselves? Maybe they think I’m just dramatic? But I will add that many of my family and friends have been amazing. They stock special snacks for J in their cupboards for when we visit, the message me to check that the food they are cooking for parties is suitable for J and they help to source new foods to try that are safe for him. So it’s not all doom and gloom.
7. Are there any resources or websites which you’ve found particularly helpful?
I have found lots of support in the form of bloggers and social media. I joined a lot of allergy groups and it’s great to be able to rant, get advice and support. I also like the Nutramigen website and Facebook page as they often shared useful links and advice.
8. What advice would you give to any parent whose child has just been diagnosed with an allergy?
The biggest piece of advice is to get to know the different names and abbreviations for the food source your child is allergic too. Often companies use different names such as whey and calcium caseinate which are both forms of milk. I found that having a written list of the names helped me when I was food shopping. Eventually, you do become more familiar with brands and it starts to become second nature. My second piece of advice would be to not let others make you feel guilty for being concerned. Allergies can be life threatening and they can change. It’s better to be safe than sorry so keep shouting at the professionals to listen, ignore those who try to tell you that you’re overreacting and be prepared to be the security net on behalf of your child.
It’s Food Allergy Awareness week from 13-19th May. Make sure you pop back for more Q&A’s!