During the recent Allergy Awareness Week we interviewed a few parents about what life is really like with a child with allergies. The parents we spoke to were very honest about the difficulties they face in day to day life and what others could do to make life a little easier. They also discussed how allergies affect their mental health and their child’s relationship with foods. They give top tips for parents just starting out on their allergy journey.
Alex is Mum of a 5 year old & a 2 year old
1. How old is your child and what are their allergies?
Dean is nearly 5 and was diagnosed with CMPA (cows milk protein allergy) just before he was 2 years old. (After lots of pushing from myself).
Connor has just turned 2 and was properly diagnosed with CMPA when he was 6 weeks old. As I was breastfeeding Connor I had to go dairy free myself, as he was reacting through my breast milk.
2. Can you tell us a little bit about how it affects day to day life and activities?
A trip to the park is never just a trip to the park. I have to make sure I have plenty of dairy free snacks in my bag, I have to be extra vigilant that other parents and children don’t offer my children some of their children’s snacks. We can’t have ice creams from the ice cream van, we can’t eat out without researching where we’re going and examining the menu to see what’s suitable for my children. Easter and Christmas time are especially difficult, Easter eggs, selection boxes, advent calendars etc.. thankfully now there are lots of brilliant alternatives, albeit very expensive ones.
When it’s someone’s birthday at school they usually bring a cake in, my children can’t have them and I have to make sure I’m on the ball with trying to be infront and buying alternatives for them. Cows milk is provided in schools for free, alternative milks aren’t so I have to buy extra and send them into school. I have to have meetings with the catering company at my 5 years old school and he has to have a special menu. Treats at school are usually hot chocolates and ice creams. So again, I provide alternatives for my children.
3. Allergies are known to affect wellbeing both physically and mentally, how do you feel it affects your child’s mental well-being and your own?
Personally, I find it exhausting. My mind is constantly in overdrive making sure no one eats anything they shouldn’t. Making sure my children know what they can and can’t eat. Trawling the shops for suitable foods, dealing with the fall out when my children can’t have what their friends are having.
My 5 year old is just starting to learn that his friends get lots of different treats to him and he finds it really sad, but again.. I do my best to provide an alternative.
4. Not everyone takes allergies seriously, what piece of advice would you like to give someone to improve their understanding?
I often think Non-IGE allergies aren’t taken seriously at all. ‘Luckily’ my children ‘just’ get diarrhoea, sore tummies, disturbed sleep, bloating and eczema after they’ve had dairy. If my child had an IGE reaction, it could mean death. I think people need to know that there are very serious consequences and a child’s health / life is not something that’s worth the gamble.
5. Do you have any top tips for other parents who may be just starting the allergy journey?
DO YOUR RESEARCH and trust your gut. There’s way too many ‘Facebook doctors’ who think they know best, but you need to do the leg work for yourself. Read all you can. Allergy uk is a wonderful aid.
6. If your child has an auto injector have you had to use it and what is that experience like for both you and your child, have you developed ways of making it less scary?
N/A
7. If your child’s allergy is food related do you find this has created a negative relationship with food, if so, how are up you trying to overcome this?
This is a tricky one, my 5 year old is very aware that he can’t have cows milk. He gets sad when he can’t have what his friends are having but for the most part he is happy with an alternative. The only thing we both find really upsetting is if there’s an unexpected birthday in his class and I haven’t known in advance so there’s no alternative for him. Watching all his friends eat cake whilst he has a biscuit is really upsetting for him.
8. Is sleep deprivation an issue for either yourself or your child due to allergies?
For us all yes. When my 5 year old was a baby, before he was diagnosed, he wouldn’t / couldn’t sleep for longer than 45 minutes at a time. This went on all night long and continued until he was diagnosed and we went dairy free. My 2 year old who has been dairy free since he was 2 weeks old is still up several times during the night. 
9. Do you find that you avoid social situations and sometimes feel isolated due to your child’s allergies, is there anything others could do to improve this for you or understand better?
Absolutely. Birthday parties are a nightmare to navigate. I often end up taking a lunch box for my children whilst the others eat the party food. I often feel the odd one out or the awkward one for questioning menus / double checking ingredients etc.
10. Allergy UK are campaigning to improve provisions for anyone living with allergies. What provisions would you like in place to support both you and your child?
Allergy UK have been the most amazing aid for me as a parent whilst I’ve tried to navigate this whole allergy battle. I genuinely cannot think of anything extra they could do.
Rispah is Mum to a 2 year old
1. How old is your child and what are their allergies?
2, dairy, eggs, mustard, peanuts
2. Can you tell us a little bit about how it affects day to day life and activities?
We have had ocassions where we have accidently kissed him after a drink of coffee (cows milk) and his forehead came out in hives, he has had hives intermittently in nursery as a result of other children touching him or puts toys in his mouth. It’s hard managing this in nursery, the hospital have provided them with an action plan should he have hives/anaphylaxis
3. Allergies are known to affect wellbeing both physically and mentally, how do you feel it affects your child’s mental well-being and your own?
He gets uncomfortable with hives, and upset when he has had an anaphylaxis. For us it can be really stressful
4. Not everyone takes allergies seriously, what piece of advice would you like to give someone to improve their understanding?
Inform family members/grandparents etc of your child's allergies. I found that family members can be quick in offering your child snacks etc. Emphasising that any food/snacks offered has to come through you as parents. I have realised not everyone understands the severity of allergies, so keep on reminding them. Share resources to family members who care for your child. Encourage washing of hands, avoiding kissing children with allergies. We realised some lipsticks /make up may contain nuts etc. people have to be really careful.
5. Do you have any top tips for other parents who may be just starting the allergy journey?
Always carry child food/snacks-not all restaurants can guarantee free allergy environment, wipe down spaces, we have avoided playgroups where food is served, maybe soft plays-most of soft play areas will ask you for allergy and request parents not feed on these spaces.
6. If your child has an auto injector have you had to use it and what is that experience like for both you and your child, have you developed ways of making it less scary?
We haven't used it, nursery has had to use the injector. It’s still scary as the first time when it happened we were not aware and did not have an auto injector so we had to call the ambulance.
7. If your child’s allergy is food related do you find this has created a negative relationship with food, if so, how are up you trying to overcome this?
He is really good with food, we have tried to offer a variety of foods and fruits.
8. Is sleep deprivation an issue for either yourself or your child due to allergies?
I am not sure, I am still breastfeeding to sleep, he does wake up for a feed. It can be tiring for me.
9. Do you find that you avoid social situations and sometimes feel isolated due to your child’s allergies, is there anything others could do to improve this for you or understand better?
Yes we have had to avoid certain events as they cant guarantee if they are allergy free. Exploring more on kids menu's in restaurant's, especially with allergy.
Allergy UK are campaigning to improve provisions for anyone living with allergies. What provisions would you like in place to support both you and your child?
Sharing up to date resources on allergies, foods. I think a check in would be good. We only get to see the consultant every 6 months. Support groups if there is for parents with children with allergies, think this will really be good.
ZOE is mum to a 1 year old
1. How old is your child and what are their allergies?
Tommy 1 year and 1 week old
IG confirmed - banana, red bell pepper, egg
NON IG - milk, soy, wheat
2. Can you tell us a little bit about how it affects day to day life and activities?
It is extremely hard with food and the pains Tommy has especially at night time. I have really bad anxiety over going places eg a soft play as Tommy has touch reactions to trace amounts. Play groups have snacks then toddlers walk around touching things so we just can't go, parties are the same but then I do not want to isolate Tommy. Baby sensory is the only class I feel safe as Alison cleans everything and doesn't allow food - for us this is essential.
3. Allergies are known to affect wellbeing both physically and mentally, how do you feel it affects your child’s mental well-being and your own?
Tommy already at his age has food aversion which SCH are working with him due to the amount of reactions he has already had, on regular occasions Tommy can go a full day without eating no matter what I try.
4. Not everyone takes allergies seriously, what piece of advice would you like to give someone to improve their understanding?
I fully get why I didn't before I was in these circumstances and also I have discussed this with Tommys allergy team slight intolerances people will say allergies - which then takes away the seriousness of situations like the one Tommy is in. It is very poorly understood by almost anyone I have met, even many health care professionals in the NHS.
5. Do you have any top tips for other parents who may be just starting the allergy journey?
Join some support groups, take photos / videos when reactions occur, write a diary. Its very hard though.
6. If your child has an auto injector have you had to use it and what is that experience like for both you and your child, have you developed ways of making it less scary?
Not had to use it yet.
7. If your child’s allergy is food related do you find this has created a negative relationship with food, if so, how are up you trying to overcome this?
Yes 100 percent - I try get him to touch food we are under the Gastro team food aversion specialist at SCH for this.
8. Is sleep deprivation an issue for either yourself or your child due to allergies?
A Major issue, our number one issue to date Tommy has not slept more than an hour due to discomfort. I am finding things so hard I have lost myself. I find everyday jobs impossible. I am like a zombie.
9. Do you find that you avoid social situations and sometimes feel isolated due to your child’s allergies, is there anything others could do to improve this for you or understand better?
Yes, as people don't understand the seriousness, but I didnt with my older children so I get it.
10. Allergy UK are campaigning to improve provisions for anyone living with allergies. What provisions would you like in place to support both you and your child?
Safe places to eat out (Nandos is FAB with allergies) other places that are safe to go eg baby classes and soft play - with no risk of food.
Thank you!
We would like to say a huge thank you to all three mums for sharing their experiences as allergy mums! These answers really highlight the impact of living with allergic reactions not just on the child but the rest of the family too.
We need to raise awareness so that parents like Zoe, Alex and Rispah do not have to live in fear of doing simple things like visiting a soft play or going to a friends party.
There needs to be more support in place to help families that live with allergies.
We hope to check back in with these families again next year.
Thanks again
Team KeepaBeat.
