Allergy mums club stories: Thidaa and Atlas
Thidaa and Atlas (11 months)
- Dairy, eggs, most nuts, sesame, all lentils
- Intolerant: gluten and soya
- Testing for: beef, hazelnuts, almonds, pollen and dust mites
Can you tell us about your journey to getting a diagnosis?
Atlas started getting severe eczema from 4 months old, especially on his face, back of head, feet and chest to the point he would scratch (especially at night) until it bled. We were having to co-sleep with him to hold his hands down while he was sleeping. This caused multiple infections from the bleeding/scratching and was very weepy.
We went to our GP who prescribed steroids at 4 months. It reduced it slightly but never went away. After two months (Atlas was then 6 months) the GP (finally) referred us to the dermatologist. We mentioned if allergies were a possibility but they said not a chance. The dermatologist gave us stronger steroids and said “it should work if you are doing it right”.
At around 7 months, I wanted to transition him to formula (from exclusively breastfeeding). He had a bad reaction to lactose free formula (hives, bumps, entire head flared up) and this finally helped us get a referral to the allergist – they finally “believed” us. However the appointment was booked for when Atlas would be 9 months. At this point our GP said to “not test for allergens until eczema is completely clear”. This advice (sadly) could have possibly contributed to a lot of his allergies.
Covid didn’t help, no one physically saw him until he was 7.5 months at our appointment with the dermatologist. At the appointment and after seeing his face, the dermatologist immediately went to the allergy team and asked for an emergency appointment to do skin prick tests that day (rather than our booked time in 6 weeks). We found out then that he was allergic to dairy, eggs, and peanuts, and possibly gluten and soya at this time.
After the formula reaction, Atlas was prescribed a dairy free formula (amino acid) which he didn’t take to (and seems to be infamous for tasting horrible so very difficult for older babies like Atlas to take). So I had to keep breastfeeding – from there I went on a gluten, dairy, egg, nut and soya free diet. 5 weeks later his eczema completely cleared up.
We then did a wheat challenge a week after that and passed!
Overall we were very disappointed with the NHS system, it was all too slow and mostly because they assumed we were either putting the steroids on wrong or just ignoring their advice. Even the allergist said “we tend to get the babies too late to try and intro the foods to them.” So frustrating.
Currently Atlas and I are on a dairy, egg, soya and nut free diet. If he has an allergic reaction to something new we use Piriton (and have it with us whenever we are out). We have been advised that we need to wait for him to reach 10kg to get an epipen for more serious emergencies. We have also had to go private to get more advice from an allergist and nutritionist – and just to be seen. If he has an eczema flare up, we use a series of three different steroids depending on severity and area on the body to control it.
Next steps are some food challenges and we will start him on a peanut desensitising programme to slowly build up his tolerance to peanuts. We are hoping it will reduce his chance of reaction from cross contamination or traces of which is really what we are very nervous about.
I’d like to go back to work and finding a nursery we are comfortable with is key. We like to meet the staff to discuss what to do and to get an idea of how seriously they take his allergies. Most nurseries are nut free now which helps ease our anxiety but we have learnt we can’t predict or control everything.
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 Atlas’ allergies affect this period for you, and what would you say to help other mums in the same position?
Atlas seemed to develop his allergies later around 4 months.
My advice (especially if you are in the UK) is to challenge your GP and if you know something isn’t right then call them everyday or really push for a referral. Especially at the beginning there is a lot of “babies have rashes or gas; just give it time it will be fine” or “it’s because you are a FTM but don’t worry” so stand your ground and trust your gut!! We now challenge every statement or research online to see if there is evidence or studies of other approaches.
If you aren’t getting answers then find the money to do a private session. We finally did at the 6 month mark and the doc immediately said allergies (and this was on Zoom!!).
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) Don’t be scared to try allergens when you are weaning – plan them out so you are ready to tackle them. The prick tests aren’t as reliable as you’d hope and actually eating it is the best test (even though can be scary). We didn’t realise that avoiding some foods for an extended amount of time could CAUSE an allergy.
2) If your baby has severe eczema before 6 months then there is some evidence that it is beneficial introduce some potential allergens as early as 4 months (like peanut) to help prevent an allergy developing. Make sure you push for more info on this with your GP if your child has eczema – I wish we knew this; it might have prevented his nut allergy. Just research the link between eczema and food allergies. (You can read more about the early intoduction of potential allergens on the British Dietetic Association website; always seek support from a medical professional if you suspect an allergy).
3) With eczema try every emollient, we went through so many to find the one that works (so far!). We use a series of three emollients throughout the day.
4) Always bring snacks when you are going out! This is very new to us since Atlas is a covid baby but it’s hard to truly trust a restaurant with your child’s allergies.
5) Keep a daily diary. I wrote down how Atlas’ skin was morning and night, what I was eating, what he was eating (when he started solids) and any creams/medications he was taking – including times and as much detail as possible. It’s crazy how soon you forget and the days start to blur.
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 Atlas’ favourite things to eat?
Sweet potato fritters and chicken/fish nuggets. Both are great because you can pack with veg/meat whatever suits! They also freeze well and are good on the go. We use flaxseed for egg replacement and corn flour when we can get it.
Mango mixed with koko dairy free yoghurt ice lolly – super easy!
Violife original cheese block is Atlas’ fav snack!
Make sure to check out the other Allergy Mums Club Stories for more helpful advice and tips. And if you are looking for support with managing your own children’s allergies, have a look at my post all about the free support resources available to help parents and carers x