The Allergy Mums Club stories are a chance for allergy parents to share all that they have learned with other parents. Here Grace describes the long process to work out all of her daughter’s allergies, including a number which are outside of the Top 14 most common allergens.
Grace and Violet’s story
I’m Grace and my daughter, Violet, is aged 15 months. Violet has IgE (immediate reaction) allergies to peanuts and peas. She has non-IgE (delayed reaction) allergies to dairy, eggs, soya, beef, coconut and all legumes (chickpeas, beans, peas, lentils, pulses, legume gums).
Can you tell us about your journey to getting a diagnosis for Violet?
As a newborn Violet used to scream every evening for hours on end no matter what we tried. She also had terrible baby acne, cradle cap and conjunctivitis. I was told that all this was normal and as a FTM I believed that to be the case. Then at 8 weeks old she started having green mucousy nappies constantly. The GP said it could be anything and not necessarily allergy. So again we just carried on assuming it was “normal”.
But the excessive crying continued and she would thrash and writhe around at night. She also developed eczema. But as she was rarely sick and was putting on weight well everyone thought she was fine. People kept telling me “it’s normal” for babies to have eczema and to be windy/wriggly at night but I decided to do my own research. Facebook CMPA breastfeeding groups were such a massive help, talking to other mums who had been through the same thing helped me realise maybe I wasn’t just imagining things! I decided to try giving up dairy (she was 3 months old by this point). It definitely helped her symptoms but not completely, so I also gave up soya. This also had some improvements but her nappies were still very mucousy and green and she was unsettled at night, some nights worse than others.
I began to keep a food and symptom diary and gradually eliminated a few more allergens.
Egg seemed to be a real eczema trigger. And I noticed when I ate chickpeas she would have blood in her stools. I had read about the link between soya and other legumes and realised I was eating legumes in one form or other every day. So I stopped eating them and as if by magic we finally had yellow nappies again for the first time in months! I was so happy!
So we carried on like this until she was 6 months. She was much happier in herself and I felt like we were getting on top of things finally. GP said there wasn’t much point referring to paediatrics as they’ll only advise to do what I’d already done and symptoms were settled. She did refer us to the dietician though. We had our first appointment with her (over the phone due to COVID) when she was 8 months.
It was difficult cutting all these things out of my diet, I did lose a lot of weight and struggled to find things to eat at the beginning. Sometimes I still get a bit overwhelmed by it all but it’s so worth it to see her feeling better.
Weaning threw a whole new set of challenges into the mix.
It was such a slow process just introducing one new food at a time. I felt envious of the other mums doing baby led weaning and just “let them eat whatever you eat”. It wasn’t that simple for us. Her nighttime sleep seemed to be getting worse not better. Her poo changed completely so it was harder to tell when she was reacting to something.
Every time we had a slip up or tried something new that didn’t agree with her she would barely sleep for 3 days. It made me so anxious about trying anything new as I was just exhausted. Well meaning family members kept telling me “not to worry about it”. I think they thought I was just mad to be honest. But they weren’t the ones up with her every hour of the night screaming and thrashing around.
It wasn’t until we tried peanut butter directly for the first time that the Doctors took us seriously.
She got an instant red rash all around her mouth. They referred us to the paediatric allergy consultant for skin prick testing. Which sure enough showed that she was IGE to peanut and peas. This really shocked me. I honestly thought it would come back negative. In a way I was kind of relieved to be taken seriously though and to prove to family and friends that I’m not imagining things! They prescribed an epi pen, which was scary, but I’m glad we have it just in case.
I’m ashamed to say it took me until she was 12 months to realise that she’s been suffering with silent reflux. As she was never actually sick I assumed she didn’t have reflux. As a FTM I never knew silent reflux was a thing. We finally got prescribed omeprazole and it was a godsend! She went from waking up every 45 mins-1 hour to some 3-4 hour stretches on a good night!
Fast forward to now, at 15 months, her diet (and mine!) is still very limited but I feel like we have finally got the hang of cooking a variety of meals that we can all eat. Her symptoms are mostly under control. We are yet to start any ladders, but I’m not in a rush. I don’t think we’d get very far on them yet anyway as she’s had a couple of reactions to cross contamination. We have appointments with the dietician and allergist every 6-12 months and we will take it as it comes.
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 Violet’s allergies affect this period for you, and what would you say to help other mums in the same position?
The hardest thing for me was the crying and the lack of sleep. It’s so upsetting seeing them in pain and feeling helpless. Having her in the pandemic didn’t help as we had no face to face visits with the health visitors and I couldn’t see my family or friends.
In hindsight I wish I’d trusted my instincts and pushed harder at the beginning for referrals and for medication.
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) Trust your instincts, you know your baby better than anyone else. Don’t be afraid to push for answers.
2) I find it easier to think about what foods she *can* eat rather than what she can’t. It helps me feel more positive and makes it easier to think of meals.
3) Keeping a food and symptom diary was the most helpful thing I did in order to get to the bottom of what her allergies were.
4) I was reluctant to try medication but really wished we’d done it sooner (omeprazole in our case).
5) When you’re weaning it can seem so stressful, particularly when you can’t work out what they are reacting to. Just take it slowly and keep a food dairy. I promise it gets easier in time!
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 is Violet’s favourite thing to eat?
Our current family favourite meal is smoked haddock risotto. We use this bbc good food recipe but substitute the butter for oil and the milk for oat milk. I don’t bother with the creme fraiche but you could use oatly (we can’t as it contains coconut). I just love it because it’s a one pan meal and it’s so quick and easy.
You may also be interested in:
- Nut, legume, peanut allergies and more; Maya, Mihir and Vivaan’s story
- Allergy diagnosis during covid; Thidaa & Atlas’s story
- Living with food and environmental allergies; Hollie, Oliver and Ethan’s story
- Where to find free & low cost support resources for parents and carers of children with allergies
- The British Dietetic Association guidance on early introduction of allergens
- A Parent’s guide to Adrenaline Auto Injectors
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