This week has been Allergy Awareness Week. We have spent the week sharing information and quotes from parents about what caring for a child with allergies is really like
We are so incredibly grateful to all of the parents who have shared their thoughts with us, their answers are very honest and highlight how difficult it can be navigating through day to day life with a child with allergies
We asked all our parents the same questions to gain a wide range of experiences
We hope that reading these comments helps you in your allergy journey or gives you an insight into how you could help someone who may be feeling isolated
Thank you so much to Rispah, Tracy, Kim, Amy, Charlotte and Alex
How old is your child and what are their allergies?
2 years - dairy, eggs, mustard and nuts – Rispah
19 months - milk, egg and almond – Tracy
18 months - celery, aubergine and courgette. She also has a condition called chronic urticaria angiodema. Her body will at random see a familiar food as a threat and therefore release histamine which mimics an allergic reaction. This can be anywhere between hives to anaphylaxis. Twice this has happened involving serious facial swelling within a few minutes – Kim
2 years – Egg - he’s outgrown soya and passed the milk ladder – Amy
17 months – dairy - Charlotte
Do you feel having allergies affects your childs mental health and/or your own?
No, I think for me what has helped is the support system from the family – Rispah
He’s too young at the moment I think but it makes me anxious about going out and about with him – Tracy
Doesn't affect my child as yet. However definitely affects mine. Stress and anxiety with allergies limits who I can trust to look after her in the event of a serious reaction – Kim
No. I worried when he was small and breast feeding, the risk of foods being contaminated and passing through my milk which happened on a couple of occasions on meals out. It made me very wary of where we ate out. With time we just learnt our go to places/foods – Amy
Sometimes affects mine as it's still quite new to us and it's difficult to know what to make her and what to buy and often means making separate meals - Charlotte
What top tip would you give parents of children newly diagnosed with allergies?
I would say, keep asking the allergy consultant questions for clarity. There is also a contact for the allergy nurses at the children's hospital, ring them if unsure. The first year will be difficult trying to get used to it. Always read the labels of any product you buy for your child, there are a lot of discrepancies sometimes in packaging. Prepare packed food/snacks, we have found most places cannot guarantee allergy-free meals, especially when you have a child who has a lot of allergies like ours – Rispah
Check everything. Sometimes ingredients change without warning – Tracy
Trust your gut! If you feel something is wrong, remember you know your baby better than anyone. It's taken over a year to get a diagnosis, and being fobbed off by so many doctors and consultants. Don't listen to everyone on the Internet/Baby groups etc, they try to be helpful but most aren't! – Kim
Join groups they can offer so much support and advice. I joined a CMPA group on Facebook and they were amazing giving weaning tips, recipes, alternative food and a good support base. Research, learn your go to foods. Be prepared - I am always armed with a variety of snacks just incase we are somewhere that can’t cater for his allergies as I don’t want him to be left out. Get dairy free snacks around events such as Easter/Christmas in advance as they always sell out. I always did this so he didn’t feel left out. Enquire in advance at parties etc if there is an egg/milk/soya free option. I always have piriton around just incase of a potential cross contamination situation as toddlers are into everything – Amy
Find a support group/social media pages to follow for tips and recipes and supermarket finds to help with adapting to the change in diet etc! - Charlotte
What could others do to make your experience easier?
Food providers could take more allergy awareness training. When I ask if something is safe for a milk/egg allergy baby the number of people who say he can’t eat something because “it contains gluten” is baffling when it’s their job to provide food to people.
Tidy up after themselves in play areas and at playgroups. I’ve had to go and ask staff to come and sweep the floor in soft plays before because people leave a table with grated cheese scattered all over the floor around the table – Tracy
Be inclusive, and mindful that different people have different journeys and whilst one may take to weaning and the parent love it, for another it could be a total nightmare or totally anxiety provoking every meal time – Kim
More understanding and awareness. People are quite unaware of allergies. A lot will say “oh a bit won’t hurt” and comments like this. Raising awareness of the effects on the child/parents and how you feel hyper alert at events/peoples houses etc incase they have a reaction.
People are very unaware when their children don’t have allergies to the potential effects to other children such as letting kids play on softplay equipment whilst eating.
I can’t tell you how much it means to an allergy mum for their child to be catered for at a party. I never expected anything so say my little boy couldn’t have the cake but had an egg/ milk free snack meant the world. Just for them to feel included and not left out was amazing. I’ll never forget the people who took this on board. Baby Sensory were also incredible catering to his allergy and always offered an alternative snack/treat for him. Inclusion is everything ❤ - Amy
Be understanding and ensure they know the triggers/symptoms to look for if Sophie eats dairy - Charlotte
If your child’s allergy is food related has this created a negative relationship with food and how do you overcome this?
No, for us it hasn't been negative. His allergies started before he had started eating solids. He has been familiar with the meals we offer him from day one of weaning. Generally, he has odd days when he can be fussy but other than that we have managed to get him to eat a balanced diet – Rispah
Not so far. He’ll eat anything he can get his hands on – Tracy
I become very anxious about food, food shopping, going to people's houses for food. I am the only one who goes food shopping, I only go to people I trust and feel confident with - Kim
Currently doesn’t have a negative relationship with food but understands that some foods he can’t have as they make him poorly – Amy
She has become quite picky with her eating now. We keep trying to introduce different things and dairy alternatives and just rotate them to try get her liking them - Charlotte
Is sleep deprivation an issue for you or your child due to allergies?
It was before we got to the bottom of the allergies. He would wake every hour to feed – Tracy
Absolutely!! From being born my little one has had stomach ache, very uncomfortable, arched back, constantly disturbed sleep and very,very sad. I knew this was not normal, but doctors told me different baby, different sleep needs. Turns out I was right and is all linked to her allergies! She sleeps better now we know – Kim
It definitely did in the early days of his allergies. I was breastfeeding and gradually cut out potential triggers which were milk, soya and egg. Once we established the allergies it became better. He sleeps through now, sometimes unsettled if he’s potentially had a reaction as his skin becomes sore and itchy which wakes him up – Amy
Prior to cutting out dairy, Sophie woke up every 30-60 minutes every night. It was mentally exhausting. Now we have cut it out, she only wakes up once or twice – Charlotte
Do you avoid social situations and feel isolated due to your child’s allergies, is there anything others could do to improve this for you or understand better?
I have been choosy with places we go to, if I cannot guarantee the safety of my child I wouldn't risk. We have found some good soft play places where they would ask if your child had allergies and ensure that all the other parents are aware (Jungle Monkeys, Messy Play)
Birthday parties, we have always attended them but made sure we had a slice of cake for our son and snacks so that he doesn't miss out. Most importantly keeping an eye on him. He is now at an age where he is aware he can't eat snacks/share with other children as he can get poorly. We keep reminding and reassuring him.
For me, awareness of allergies to family members and friends. Sometimes people can be ignorant of how serious an allergic reaction can impact a child – Rispah
No, I’m just selective about where we can go – Tracy
I don't go to my inlaws and they don't help with childcare because I have little faith that they would be able to handle it in the time critical way required. I feel very isolated, like no-one knows the anxiety of being an allergy mum! I don't think people really understand unless they've walked it themselves or with a very close friend - Kim
I definitely used to avoid social situations. Not everyone understood the severity of his allergies. He ended up in resus in hospital. It’s worrying putting your trust in others not to cross contaminate foods. It amazes me how restaurants don’t actually understand allergies. When he was allergic to milk and soya restaurants would say he could have something that was vegan (the vast majority of vegan foods have soya in) it opened my eyes to how people don’t understand allergies. At a play centre they got an egg snack out with the same equipment they just got a cake out with. I think it all comes down to education and understanding the severity of some children’s allergies. It’s the worry as a parent just being so twitched over your little one. I definitely avoid places due to this – Amy
No not really. It can be quite tricky when eating out or if we bake with friends, she has to make separate - Charlotte
Is there somewhere you could recommend that has excellent standards regarding allergies? A restaurant, childrens activity, website etc
Delightful Touch in Sheffield. I must say so far they are the best in terms of catering for children with allergies. Natalie the owner will always go out of her way to ensure her team is aware of the allergies and ensure good hygiene standards have been maintained. The staff there are also very pleasant and friendly.
https://www.thedelightfultouch.com/
https://www.facebook.com/MessAroundSouthYorks/
https://junglemonkeys.co.uk/
Rispah
Baby Sensory and Toddler Sense have both been great
Mucky pups club and messy play works well around allergies when we have been
OK diners were brilliant and made us aware of the extra wait so the chef could clean down the entire grill
https://www.babysensory.com/
https://www.toddlersense.com/
https://okdiners.com/
Tracy
TGI Fridays were brilliant when I went. I have had a few places basically ask me to leave because they couldn’t guarantee allergy free meals because they aren't the 'top' allergens.
La leche has been brilliant for supporting breastfeeding with allergies!
https://laleche.org.uk/
https://www.tgifridays.co.uk/
Kim
Main Group - CMPA Support | Facebook
Breast Feeding - CMPA Support | Facebook
Allergy UK | National Charity
Amy
An update from one of last years Mums
Alex was one of the parents who we interviewed last year and rather than complete the survey she wanted to share her experience with us
My children are 3 and 5. Both of them have diagnosed CMPA, cows milk protein allergy.
D who is 5, was diagnosed at 2. And C who is 3 was diagnosed within the first few weeks of his life. The first few years with D were incredibly difficult. He constantly had a rash, his skin was incredibly dry, he had eczema, his poor tummy was so swollen. He had constant diarrhoea, was sick frequently, he rarely slept and he cried ALL THE TIME but because he was gaining weight, no one seemed concerned, other than me.
I just knew something wasn’t right but had no idea what. I began to do some research into CMPA and found that he ticked almost all the boxes in terms of symptoms. I finally was able to go to my GP and say ‘I believe this is what’s wrong, he has all these symptoms and we’d like a referral to a dietician’.
Our dietician was brilliant. She was incredibly knowledgeable. She gave me so much information and it felt like such a weight had been lifted. After a few weeks of being dairy free he seemed like a different child. No more diarrhoea, no more swollen tummy, his skin improved and we even started getting some sleep. 2 years into his life and the fog finally started lifting. When he turned 3 (a year after being diagnosed) our dietician gave us the go ahead to start the milk ladder, a 6 step guide to reintroducing milk, starting small in terms of a quarter of a biscuit in step 1 then ending on actual cows milk as a drink for step 6. We’ve been at it a couple of years now and had plenty of set backs in terms of symptoms reappearing BUT, we’re finally on the last step. For both my children!
I’m not sure whether it’s right to admit this, but having a child with allergies IS an inconvenience. It can be hard to make sure you’re checking every ingredient list, every single time. It can be hard eating out and not knowing if you trust the menu. It’s hard seeing their friends at school eating things that they can’t, it’s hard having to always provide an alternative for them, it’s hard going to the seaside and not being able to buy them an ice cream or a donut because you’ve no idea what’s in them.. and the one I struggle with most is the guilt. The guilt of D being so uncomfortable for such a long time when he was a baby, that’s why I very strongly believe that knowledge is power. Trust your gut, do your research and most importantly please realise that there is light at the end of the tunnel and things will get better.
Again a massive thank you to all the families that have shared their journeys with us to help raise awareness. To read last years blog click here
