WRITTEN BY KELLY BRADY (GUEST WRITER)
Sharing my experience weaning an allergy baby;
Throwback to the bank holiday weekend August 2017 and breakfast time in the Darlington household. We were having scrambled eggs on toast and had our then 8 month old daughter, Orlaith, joining us at the breakfast table. We had been weaning for a couple of months, mixture of baby led and spoon feeding, which she had been doing really well with so I didn’t think twice to giving her a little bit of eggs and toast to have a play with. Despite having a severe nut allergy myself, I was very naïve I suppose to other potential allergies and aside from peanuts, I hadn’t been avoiding any foods when we began our weaning journey. But I guess having an allergy myself prepared us for what happened next – almost instantly Orlaith started getting unsettled and her face, hands and anywhere the egg had touched (she was just in a vest) came out in hives and an itchy rash.Her eyes and lips started to swell and the rash started spreading pretty much everywhere, very quickly. She had been prescribed an antihistamine for hay fever over the summer so we went into autopilot, administered the antihistamine and called 999 (looking back I can’t actually believe how calm I was as revisiting this now has me crying all over the laptop!). The response to the antihistamine was almost immediate, and knowing the signs and symptoms of anaphylactic shock, I was confident that we didn’t seem to be heading in that direction.We spoke to the 999 call handler and talked through what was happening and instead of an ambulance being sent we were given an emergency appointment at the local a&e department. Just when her skin seemed to be calming down, the vomit came. So much vomit. So much when considering she must’ve ingested the tiniest amount of egg. Then she slept. And I panicked she was too drowsy so we called 999 back but just as we were going through what had happened, she woke up, smiling, giggling away like nothing had ever happened.Picture 1 (skin reaction from the egg touching), picture 2 (10 minutes after antihistamine) Picture 3 (90 mins later skin still showing signs of reaction but swelling all subsided).We took her down to her appointment where she was checked over and we were advised she was fine, but to avoid egg for the time being and we were referred to the allergy department. Little did we know this was the beginning of a long journey dealing with numerous allergies. It got to a point it felt like she was reacting to everything she was trying, including things she had tried before. The list at 10 months old when we saw our consultant for the first time included banana, avocado, all types of wheat, oranges, beans, sesame, tomatoes, chicken, soya, peas, pulses and we hadn’t dared to try any sort of nuts with her. A lot of these reactions were skin based, hives coming up and itchiness and sometimes a bit of a bad tummy. All the reactions were dealt with by an antihistamine, a nice cool wash down in the bath and eczema creams applied, but what should have been an exciting weaning journey became a stressful and scary situation each meal time.At 10 months old Orlaith had some blood tests which confirmed the egg allergy and showed she would react to some nuts it she tried them. Skin tests showed that her skin did react to the majority of the items on the list above, but as these didn’t appear as ‘reactions’ on the blood results, the consultant advised that we should continue to challenge her to these items, one by one, and to try and eventually let her body tolerate the foods. A surprising result on the blood tests was a reaction to beef and lamb, but the consultant advised us that he believed this to be an anomaly and to include these in Orlaith’s diet. However, after the appointment we realised that she had had reactions to these in the past – she had a reaction to spag bol which we presumed was to tomato, and a reaction to stew and dumplings which we presumed was the wheat in the gravy and the dumplings. So beef and lamb were added to the lengthy list!To challenge Orlaith we have to allow her to try a small amount of the food, if she has a small reaction, we can continue trying her, gradually increasing the amount each time. If she has a more severe reaction, we have to pause that challenge and then re-challenge in two to three weeks time. A lot of the foods she did still react to for quite a long time, and the biggest challenge sometimes was identifying what actually was causing the reaction. And as the list was so extensive, finding foods that she was able to eat safely became a challenge in itself. Gluten free bread for example a lot of the time has egg in it. Most vegan food will use lentils and pulses. Quorn as a beef or lamb replacement also has egg in it. Soya seems to be in everything. I am forever grateful that she has always been okay with milk and other dairy because that would have ruled out a massive part of her staple diet for a long time.One of the biggest challenges we faced was the wheat intolerance. She would sometimes be absolutely fine with bread, and other times she would have really bad reactions to it. We noticed that the reactions were worse with white bread products and explored the notion that she may be okay with whole-wheat as opposed to white wheat (which I never even knew was a thing!). The biggest turning point in the wheat situation was when she was around 18 months old and she changed rooms at nursery. Her skin was probably the worst it has ever been, she would be in nursery Monday-Wednesday and by Wednesday afternoon her skin would be so sore and itchy I would spend Thursday – Sunday trying my best to get her skin under control and the same thing would happen again the following week.Her nursery have been so amazing through all of this and always cater for her so well, so this wasn’t their fault at all, there was just something happening in the tots room that was different to the teenies room. Orlaith’s speech was really coming on as well around this time and I offered her rice krispies at the weekend for breakfast which she said no to as they hurt her neck. Everything all of a sudden clicked into place, I checked the ingredients on the box and barley was the only allergen, no wheat, I remembered she had a bad reaction to soreen which also had barley in, and those heinz baby biscuits, checked the box, barley in as well. The main change from the teenies room to the tots room – no longer having porridge for breakfast but having rice krispies instead every morning. Turns out she was pretty much tolerable to wheat but really couldn’t handle barley. Hence the reactions to certain breads and other wheat products which also had barley in. Nursery swapped her krispies for some gluten free ones and within three weeks her skin was so much better.We have luckily to date not had too many hospital visits following reactions with the majority of them being dealt with with an antihistamine at home. We had a scary reaction to what we think was fish, (although the meal she had, she had previously had with no issues, but fish was the only allergen). The swelling took a very long time to calm down and on account of her also becoming drowsy she was rushed to a&e in an ambulance. The drowsiness was ultimately caused by low blood sugar levels and not due to going into an anaphylactic shock thankfully, but she was admitted overnight to be monitored as it was quite different to previous reactions.She has since had more blood tests which still show heightened reactions to eggs, some nuts and beef and lamb (again the doctors can not believe the beef and lamb results) and at the moment we still avoid these foods. She has had egg by mistake recently and she didn’t have any skin reaction but complained of a itchy throat and was then very sick. She also just last weekend had some jelly sweets which had beef gelatine in and got a rash on her face (see picture 8). But the good news is, by persevering and keeping endless food diaries of reactions and non reactions, we have been able to get a lot of food now in to her diet. She can have chicken, banana, oranges, tomatoes, all wheat, peas and soya. We noticed the reactions were less severe when the product was cooked, ie, she would be okay with banana bread, but not raw bananas for example. Although we have also noticed that if she has too much of something, too much wheat or too many oranges, she will get an eczema flare up.She still has reactions to sesame, avocado, beans and lentils, but this isn’t surprising as they are linked to nuts and tree nuts, but the reactions do not get any worse which is a good sign. We are yet to try beef, lamb or any fish until we can establish the above foods. And she is still unable to tolerate barley in her diet without getting a really bad eczema flare up.
Now we have established wheat in her diet, we were going to start the egg ladder last year and start challenging her to egg. It was important for her to tolerate wheat in her diet first, as the first step of the egg ladder is egg which is baked, so in a scotch pancake for example, which will also contain wheat, so we needed to know that it was definitely the egg she was reacting to. But given the pandemic we put a hold on that for now as we didn’t fancy any potential A&E trips.What I can say is that Orlaith has been amazing through it all, she is still a very adventurous eater and she handles it so well if we are out and about and she is unable to eat something (normally homemade ice cream or cake!). She has known from a young age what she can and can’t eat and is able to communicate this to other grown ups if we are not around. She has also recently learnt how to spell and read EGG and NUTS so she looks out for this on packets if trying something new (supervised obviously). We are hopeful she will grow out of the egg allergy and when we are brave enough and everything with Covid calms down we still start the nut challenges under consultant’s care.If I had any tips for allergy parents or parents who suspect their child has an undiagnosed allergy or intolerance, is to firstly document everything. Pictures, food diaries, treatment and what happened after. At hospital appointments they will want to know everything so it’s good to be prepared and be confident in what happened and have the evidence to back it up. We have been told a good few times now that an allergy to beef and lamb is ‘impossible’ and almost laughed at when asked to be tested for it. Secondly, keep persevering with food challenges if it is safe to do so, whilst it obviously not nice to potentially cause distress to your baby, ultimately the more they try the food the more they should be able to tolerate it (of course under the guidance of your consultant).We are just about to start the weaning process with our second daughter so it will be interesting to see what allergies and any intolerances she may face. But I feel much more prepared this time and will take it very slow and careful to keep track of any skin problems/reactions. And we are so thankful that for Orlaith so far she hasn’t gone into an anaphylactic shock following any reactions.