The Allergy Mums Club stories are a chance for allergy parents to share all that they have learned with other parents. Here Carly talks about her challenges to be taken seriously by healthcare professionals, and the impact this had on the newborn period and the weaning experience.
Carly, Zach and Noah’s story
I’m Carly and I have two sons; Zach (2.5 years) and Noah (4.5 years). Zach has IgE (immediate reaction) allergies to milk and egg (with anaphylaxis). He also has Non-IgE (delayed) reactions to soya, coconut, kidney beans, mustard. Zach previously had an oat allergy (which caused bad eczema flares), which he outgrew at 17 months.
Noah has non-IgE cows milk protein allergy, but this has not been professionally diagnosed. All the signs and symptoms were there but were ignored by health professionals. We have removed full fat milk from Noah’s diet again and he is doing better.
Can you tell us about your journey to getting a diagnosis for Zach?
Zach’s symptoms started at 2 days old. He had back arching, the sound of sheer pain when feeding, congestion, grunting, silent reflux, extreme belly bloating and mucous stools. He started to lose weight, dropping 2 centiles quickly because of the nappies. The final symptom was head to toe allergy rash/eczema/hives.
I visited the doctors a good 4/5 times about Zach’s symptoms but was fobbed off each time. His weight decline was only picked up at our Health Visitor weigh in sessions. I used to take him there weekly, just for something to do and to get out of the house; he used to scream all day long.
We really didn’t had an easy time. We were constantly back and forth at the Doctors. He ended up in paediatrics as they thought he could have bronchiolitis, but it was actually his CMPA reaction affecting his breathing. We then had struggles with milk once diagnosed. It took us four prescription milks and three thickeners until we found the right for him.
With Zach’s other food allergies it has all been managed through trial then elimination. I researched so much from social media groups or articles about allergies and what symptoms to look for. As daunting as they sound, IgE allergies were easier to manage as you have a visual within 2 hours. Delayed allergies were harder as you have to pin point what could have caused it and retrace your steps over the last 72 hours.
We waited until 6 months to wean Zach. We did attend a dairy free weaning workshop, but I found it completely useless as it didn’t tell me anything I didn’t already know.
I hated weaning! I wanted it to be so different with Zach to what I had done with Noah. He’d had undiagnosed allergies and I had been told “oh it’s just viral” or “just give him antihistamine and keep feeding as usual”. I had such an awful time with him. I wanted to have a different experience with Zach but unfortunately it didn’t happen.
Zach seemed to react to around 50% of what we tried in the beginning! Every child and every reaction is so different, you have to go with your gut instincts. Believe it or not, Zach’s main reaction in the beginning was a really angry red patch he got on his right cheek. We got multiple hives to some foods.
In the very beginning he reacted to parsnip, chickpeas, oats, mango, kidney beans and coconut. Soya we knew already through having it in the failed milks. With gluten he used to come out in a tiny pin prick rash all around his face and strawberries gave him blotchy hives. Egg was trialled in a gluten free crumpet and we got his face/cheek flare. We trialled twice with the same reaction so luckily left it at that point and didn’t push egg any further until our allergy testing.
The weeks and months after having a baby are such a vulnerable time for new mums, and allergies can make this especially challenging. How did Zach’s allergies affect this period for you, and what would you say to help other mums in the same position?
I can honestly say I don’t remember much, my brain’s coping mechanism is to block things out. I had a 2 year old and a brand new baby that just screamed non stop for England. You couldn’t settle Zach unless you were holding him. The only thing that really helped a little more in this time for me was that I continued to keep my eldest in childcare so it didn’t disrupt his routine. That was my saving grace. I would just have hours and days at a time of not moving with Zach. He was literally fed and held. We were on to a winner if we managed to get dressed that day!
Advice to anyone would be just trust your mummy instincts, they will not fail you with your little one. Never feel that you might be wasting a GP’s time, as that is what they are there for. Unfortunately it’s a very difficult process to get help for so so many parents but the constant trying is what gets you there in the end. You just need that final person to listen.
Often it’s the little things we learn day to day as parents that are most helpful for others who are new to living with allergies. Can you share 5 things you have learned which might help to make life easier for other parents?
1) You have to try a food first really to know if you are allergic to it for delayed allergies.
2) There are 2 types of allergy – IgE (Instant) and Non-IgE (delayed). Tests will only detect IgE. Nothing will detect Non-IgE other than elimination and reintroduction. (See Allergy UK for more information about testing for allergies).
3) Check ingredients in everything – you will be shocked what might have milk in it. Our first slip up was with using teething powders. I personally find it easier to go on shopping apps and look at ingredients lists that way. Once I learnt to do this it saved hours and hours of standing in supermarkets looking at the backs of products.
4) Eating out – although the allergen menu might state that what you would like to order is “safe”, the oil the food is cooked in may have been used for other non-safe foods. This is classed as a “may contain”, or risk of cross contamination. For delayed and less severe allergies this might be fine. However, for Zach’s IgE allergies it means he could potentially have a reaction. He has had two severe reactions following one of his IgE allergens being fried in the same oil at some point. So always ask, and assess what is safe for your own child’s situation.
5) Take safe snacks with you wherever you go!! Even this week, 2.5 years down the line, I messed up. I didn’t take snacks, presuming the establishment we were visiting would have suitable food. Nope, none!! So always have a spare snack/drink in your bag.
It can be really hard to think up meal and snack ideas when you are dealing with allergies, and I’m always interested in what other people are cooking to give me inspiration! What are your children’s favourite things to eat?
Zach & Noah are both really fussy eaters. We are starting to think there is just more than normal fussiness, especially with Noah now at 4.5 years old. Zach’s go to though is Nuggets & Chips. I do love to cook and find new meals that are our allergens free. I always cook meals that are Zach safe for us all and still offer to both boys. The one meal I can cook that Zach will always eat though is “What Mummy Makes” Pork Koftas & garlic flatbreads. I call them a nugget and Zach happily obliges.
One weekly staple is my Sunday American Pancakes – both boys will eat them. This then makes me happy as I use Pea milk and Chia Seeds in the mix to get the extra calcium/iron into them with it tasting yummy.
You might also be interested in:
- Nut, legume, peanut allergies and more; Maya, Mihir and Vivaan’s story
- The emotional impact of allergies; Erica, Jack and Oli’s story
- The Allergy Companions guide to eating out with a food allergy
- Where to find free & low cost support resources for parents and carers of children with allergies
- A Parent’s guide to Adrenaline Auto Injectors
- Anaphylaxis UK
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