The Allergy Mums Club stories are a chance for allergy parents to share all that they have learned with other parents. Here Maya describes her family’s challenging journey to get support with her son‘s multiple food allergies.
Maya, Mihir and Vivaan’s story
My name is Maya, and I have two sons called Mihir (aged 5) and Vivaan (20 months). Mihir has many allergies. All nuts, peanuts, sesame, wheat, eggs, coconut, legumes, lentils, seeds, milk, tomato, oats, apricot, and soya. Vivaan’s only known allergy is milk, but we suspect there may be a few more
Can you tell us about your journey to getting a diagnosis?
For Mihir, he started with a little rash on his elbow at 2 months. When I took him to the GP, he told me it was infantile dermatitis and that it would go away on its own. He said I just had to moisturise him regularly. The rash/eczema kept spreading and soon he was covered head to toe in it. He also had awful cradle cap and even then the GP insisted it was nothing to worry about.
At about 5 months I took him to a private paediatrician who told me it was eczema and gave me some hydrocortisone to apply when it flared up. When he was 7 months old I decided enough was enough and I changed GPs. Luckily the GP I saw was great. He immediately told me to take him to the A&E since his skin was so awful and infected. He provided a letter asking them to do an allergy test.
When we did the test, we found that he was allergic to everything they tested him for. I was heartbroken. Even then we didn’t really know what to do and couldn’t get to see a dietitian or allergist till 6 months later. I continued to give him cows milk formula since I just didn’t even know there were other options.
At 1, someone told me about Neocate. We used to buy it privately since our GP wouldn’t prescribe it as the hospital hadn’t advised it. At about 1.5, once we saw the allergist, dietitian and dermatologist things started getting a bit better in terms of helping us manage the situation. We were advised to exclude all allergic food till the doctor recommended trials.
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 Mihir’s allergies affect this period for you, and what would you say to help other mums in the same position?
It was extremely hard for me. My son was always scratching and would wake up every 20 minutes after 2am since he was so uncomfortable. I was tired, resentful of my son and the extra care I had to give him but then guilty for feeling like that towards an infant.
What I can say to other mums is that it gets better. Maybe they will always have the same allergies and don’t outgrow them or maybe they do but you develop crazy abilities to cope with all of it. I am amazed by all the fellow allergy mums out there and the things they do for their children.
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) Cooking from scratch, though initially daunting, helped control a lot of unknown variables (oils, gums/thickeners etc).
2) For a birthday party, I call the host’s parents and find out what they are likely to serve. I try and replicate with safe ingredients for my son. It’s a lot of work but that way he doesn’t feel left out.
3) Talk to your child about their allergies. My son, even at age 3, knew all the things he was allergic to (it’s a long list). He wouldn’t touch/eat anything that wasn’t handed to him by either my husband or myself. Once he started school he would always ask his teachers and friends what was in things before he ate it.
4) It’s very easy to get overwhelmed with navigating the world with allergies, especially as you want to protect your child. I’ve found that having a positive mindset has really helped me. Initially I felt like a victim and wondered why this horrible thing had happened to me. It brought me down so much. Now, I just think of how great we have managed so far and all the progress we have made.
5) Friends and family may not always understand or may think you are overreacting. That’s really hard when you are obviously not! Don’t let them get to you and trust your instincts.
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?
I bake a lot now – muffins, banana or zucchini bread, donuts etc. I recently found that Rowse does a chocolate honey spread and I use that with rice cakes or crispbread. Popcorn is another safe snack for us.
You may also be interested in:
- Living with food and environmental allergies; Hollie, Oliver and Ethan’s story
- The emotional impact of allergies; Erica, Jack and Oli’s story
- Allergy diagnosis during covid; Thidaa & Atlas’s story
- Where to find free & low cost support resources for parents and carers of children with allergies
- Practical tips to help your child’s eczema
- The British Dietetic Association guidance on early introduction of allergens
- A Parent’s guide to Adrenaline Auto Injectors
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