Being an allergy mum is no picnic in the park!
It’s so important to talk about your experiences because it can allow you to heal. Living with allergies can be incredibly challenging and I welcome others to express themselves in their own words, giving them a chance to be heard.
This week I’m sharing the story of a fellow allergy mum and the defining points in her journey which has led her to find her purpose amongst the world of food allergies.
I’m Jay and I have 2 beautiful boys; Ash who is now 8, and Aran who is 3.
Nine years ago, my husband and I decided to sell up our house in London and move out to Surrey because we wanted a quieter life and to start planning for a family. In April 2012, we moved into our new house and a month later I fell pregnant. Life was beautiful, we were so excited and grateful that we finally fell pregnant after 5 years of trying.
My pregnancy was healthy, like any new mum-to-be I decided to improve my diet and cut out all processed foods, preferring instead to stick to healthy foods, fruits, and vegetables. All meals are freshly cooked at home. I wanted to make sure my baby got the best of the best.
As a first-time mum, I wanted to do everything right, breastfeed my child, meet friends for lunch/coffee, go on walks with my baby, go on holidays; both my husband and I have traveled the world and we wanted Ash to be part of the adventure, to live life without limits.
When Ash was around 4 months old, I noticed his skin flaring up in eczema, this change started following a holiday to the south of France. At first, I thought maybe I have exposed him to too much sunlight but then I noticed every time I would breastfeed his skin would flare up with eczema, but after a few hours his skin would calm down. The holiday that was supposed to be fun, relaxing, and chilled turned out to be incredibly stressful. At one point I said to my husband “If Ash gets worse, we will need to cut our holiday short and go home” I was so stressed out.
First signs that things were not OK.
Once we were home, I called our doctors and booked an appointment, the GP checked Ash and said it was just baby eczema, but I wasn’t convinced. I did everything the GP asked me to do and there was no change. For months I was going back and forth seeing the GP, speaking to health visitors, trying out the emollients, nothing seemed to work. At one point I felt like I was losing my mind. I kept repeating myself, but no one would listen. I wonder if people thought I was a crazy mum.
When Ash turned 6 months, we started weaning. I followed the NHS weaning guide to the T. When I introduced the tiniest bit of dairy, I noticed Ash had come up with a few hives. At the time, I had no idea that this was a symptom of an allergic reaction. Ash had developed allergies and none of the doctors or health visitors had picked up this. At 7 months, we tried him with scrambled eggs. As I tried to feed him, the egg missed his mouth and landed on his stomach. Within minutes Ash’s stomach started to turn red, he started to itch and his whole stomach was covered in hives. I called 111 in a panic not knowing what was happening to him. When I explained the symptoms to the medic over the phone, he too did not know what the signs were and was advised to give Ash infant paracetamol (Calpol) and monitor him. It was then I was forced to go down the route of private medical care to find out what is going on with our son.
We felt we were left with no option but to seek advice through private health care.
Only by using private healthcare did we get to see a dermatologist and a dietician, it was confirmed Ash had multiple food allergies and so a new chapter began in our life “Welcome to the world of food allergies”, no one prepares you for that.
The specialist referred us to the allergy clinic and put us on the waiting list. In our appointment, the specialist asked me to remove all foods that Ash was allergic to from my own diet, WHY? because I was still breastfeeding, and Ash was reacting to foods through my milk. I came home and straight away avoided all the foods that Ash was allergic to, eggs, all nuts, soy, dairy, wheat, and sesame. Those two weeks were a real struggle I was living on fruits and veg, until one day I had a breakdown, and I called my husband at work to say “I cannot do this anymore please help me” I am hungry I have nothing to eat.
My husband got in touch with the specialist, who then booked us in with a private dietician, the appointment was not what I had expected, she suggested we transfer Ash on to a medicated formula milk, did that go down well? “NO” it did not. Ash completely refused to drink it.
He developed even more allergies.
As he got older, we tried various kinds of milk and alternative products, Ash was allergic to wheat, dairy, eggs, soy, sesame, and all nuts, so we experimented a lot when it came to making cakes and snacks, even making our own bread. Thankfully, Ash is now able to eat wheat and we have successfully introduced soya protein (lecithin) soya flour into his diet.
It took us nearly 4 years to get a routine in place for Ash, understanding his allergies, going to allergy appointments, learning what he can and cannot eat, how to plan holidays, eating out, birthday parties, picnics the list goes on. We have done everything and will continue to do everything to keep our son safe, and we have had to educate ourselves on allergies so that we can then educate our[JD1] friends and family.
Back then, there was little, or no support offered to parents of children that had been diagnosed with food allergies. It was a very lonely journey and a scary one, but now things are different, so much work is being done in the allergy world and one day this world will be a safe place for our children to live in.
Not everyone understands how hard it is.
As parents, we know how to keep our child safe and we know what to do in an emergency, however, we struggle with people’s views and comments about allergies. Since Ash’s allergy diagnosis we have had to let a lot of people go out of our lives, the judgment, the comments, not listening to us, and putting our child’s life in danger was impacting my mental wellbeing it was best to just leave them behind if we wanted to concentrate on our child’s wellbeing. It does upset me that the very people who were once part of my life never took the time out to understand me, never took the time out to really understand how life-threatening our son’s allergies are, instead they judged me as a mother and as an individual.
There still is a lot of work to be done in the South Asian community, not everyone understands what food allergies are and what risks they pose to individuals/children. It is hard to explain to our older generation, the generation of our grandparents and parents, they do not believe that allergies exist because food allergies are invisible, or you can say their mindset is wired in a certain way that they find it challenging to see beyond what they believe. There have been times when people have had to watch Ash having an allergic reaction to even comprehend how dangerous allergies are.
Luckily, our close family and friends understand the severity of Ash’s allergies and endeavor to do all they can to keep him safe, the struggle does not lie with us, it is the outside world; when we get invited to weddings, birthday parties, or picnics that is when my anxiety levels are rocket high. When we get invited to functions my husband and I sit down and discuss how important is it for us to attend, there have been times when only one of us could attend an event because the caterer could not cater for Ash or they could not guarantee to prevent cross-contamination with the foods, or if it is an event of 10 or more people and we know people will not listen to us.
I felt so alone.
Since Ash’s allergy diagnosis, life has been one big rollercoaster. A while back we were invited to a picnic. I arrived at the picnic with both my sons and all I could see is a table at the end of the park laid out very nicely with foods that Ash was allergic to, foods that pose a risk to his life, cakes, chocolates, popcorns, Indian sweets that normally contain nuts, crisps and much more. The only safe food Ash could have from the selection was fruit. I looked around and thought to myself, what have I done there are far too many people here and too many children to keep an eye on?
Questions kept running through my mind, how am going to keep an eye on Ash and his little brother on my own, how was I going to get all the children to clean their hands after they have eaten those potentially life-threatening foods? However, this was the least of my problems, usually, when we go to an event, we always prepare Ash’s food and take it with us, but that day the boys refused everything I had made from them Why? because they wanted to eat what everyone else was eating and they wanted the popcorn.
“Why does there need to be POPCORN?!!!” One simple snack made my life hell that day.
As soon as the boys saw the popcorn that was all they wanted, I could not allow the boys to have the popcorn at the picnic because the allergen labeling stated “May contain milk”, we have to avoid foods that also have allergy labeling with “may contain…” on them.
Someone at the picnic suggested, “why don’t you use the popcorn boxes and put their food in them, so they feel like they are eating popcorn” I mean really!!!? all that did was add to my anxiety, I just needed a moment to think clearly about how am I going to deal with this situation, but I see how in their view they were trying to be helpful.
Ash was so upset that day I wish I had known that popcorn was going to be at the picnic, sometimes I wonder was it my lack of communication or do people chose to ignore what I say on multiple occasions- “Ash has food allergies.” I struggle to understand WHY people do not understand how dangerous food allergies are. Is it simply because food allergies do not impact them because their children do not have food allergies? Do we not have a duty of care to protect other people’s children, keep them safe, teach our children about food allergies?
No one, that I could see had asked their kids to clean their hands after eating their food, the kids were running around chasing one another with cupcakes in their hands, there was popcorn all over the floor, and I was running around cleaning it up whilst all the other mums sat around chatting to one another. And if I wasn’t cleaning, I was looking out after Ash to make sure none of the kids touched him, all the while neglecting my younger son who was supposed to be having fun but was crying out for my attention. How do I look after Ash whilst all the children are running around with foods in their hands that could harm my child or Aran who wanted to eat everything that was on that picnic table? It would have been simpler for us just not to have gone.
When I was looking after Ash or cleaning up, people would give Aran snacks without checking with me and then come up to me and say, “We have given him a bit of cake is that okay?” Well, no it is not okay what if Aran were allergic to egg or something and they did not know, my child would be having a reaction, that would not be okay.
We no longer live in a society where it’s okay to just give foods to kids without checking with their parents and especially when the kids are so little that they cannot ask themselves “What’s in the snack because I have food allergies?” we need to shift our mindset to a bigger picture and realise that food allergies are increasing 1 in 13 children are diagnosed with food allergies, how catastrophic would it be if you gave a child food that they were allergic to? would you be able to live with that?
The picnic was a huge learning curve for me, in the end, the kids had a good time, but I am not going to lie for me it was time to reflect, what could I have done differently? Could I take a bag of Ash-friendly popcorn next time? I walked away feeling so overwhelmed and so lonely with so many feelings and thoughts going round and round in my head. The food that I had cooked for my children that day they did not want to eat, so for hours the kids went hungry, no one reached out to me to say to me, “Here you look after Ash and we will look after Aran, we will check with you before we give him anything to eat”. This is what I wished they had said. The moment I got home I felt a sense of relief, all I wanted to do was shut myself in a room and cry.
It’s getting easier now and I’m able to help others.
After 8 years of learning about food allergies, I think we’re finally settled. Ash’s eczema, asthma, and food allergies are all under control. I now run my own allergy support group where I support families and children who live with food allergies, I am now a Food Allergy Coach. I am so passionate about food allergies that I want to share my knowledge to educate as many people/children/nurseries and schools as I can about food allergies. We do not need to be afraid of food allergies, all we need is to educate others and for others to learn how to manage food allergies and how we can ensure that no child feels isolated or excluded in any way.
Thank you for taking the time out to read our story. I always tell myself no matter how hard or how challenging life may feel always remember there is light at the end of the tunnel.
If you like to find out more, connect with me @ash_friendly on Instagram.