When Your Baby’s Skin Hurts: Living With Severe Eczema and Multiple Allergies
Trigger Warning: This post includes discussion of infant hospitalisation, blood, severe illness and treatment with IV antibiotics, which some readers may find distressing.
Please note: this is just our family’s experience. I’m not advising or advocating for anyone to copy us. Please reach out to relevant support teams in your area for proper advice.
This is a long one… go grab a cuppa and settle in. From one tired mother to another – bear with me.
Introduction
Leyla was born small; 5lb 1oz, just an ounce more than I was as a baby. She came out fighting, but right from the start, it felt like it was going to be a big test. Of all my children, Leyla had it the hardest: the pregnancy scares, the colic, the reflux, the endless nights. Lay her down and she’d vomit everywhere – not a little spit-up, but projectile, all over the bedding, our clothes, and the carpet. I can’t count the number of times I was on my knees at 2am, scrubbing the floor in tears.
We tried everything. Infacol, Dentinox, Colief, BioGaia probiotics, Optibac, every type of gripe water, fennel tea, massages, tummy oils, gas relief gadgets. Nothing worked. She wouldn’t even take a bottle, so there was no break for me, no matter how exhausted I was. I remember holding her and crying, feeling like I was losing my mind. My husband tried, but there’s only so much he could do with a breastfed baby; plus we had a toddler running around. Our families did what they could, but at 3am, when a baby’s in pain and refuses the bottle, it’s just you and her.
I wore her in the carrier everywhere – walking, sitting, even dozing off, because I was scared I’d drop her from sheer exhaustion. If I put her down, the screaming would start again. Not crying. Screaming, red-faced, writhing in pain. I felt completely helpless. In those early days, I honestly thought I was falling into depression.
The Early Signs
I started noticing that certain foods or drinks that I had would make her reflux even worse, so during the first 6 months to a year I cut out dairy, eggs, soya, caffeine, even nuts. Some things helped a bit, but the pain was still there. We tried to keep everything as natural as possible, but at some point, you’ll try anything, especially when it’s affecting your health, marriage, and your other children.
Then came the blotches. Leyla started getting little red patches on her skin. The health visitor said eczema, told me not to worry, she’d seen worse, just keep her moisturised and avoid scented products. I felt fobbed off every time I tried to explain her symptoms.
I can still remember the ambulance ride from one Ramadan night, she had been screaming non-stop all day. My mum had invited us for iftar, but I was miserable. In the end I was really concerned and I called 111 who sent an ambulance. The paramedic looked at me like I was neglectful, asking why I hadn’t brought her in sooner, questioning me about vaccinations. I was running on no sleep and his words stung. At the hospital, Leyla slept like an angel – of course! – and the doctors did their tests, ruled out anything serious, and sent us home. A female paediatrician even suggested I was overfeeding my breastfed baby. Can you believe it? Feed on demand they say! I was too tired to argue, but inside I just wanted to scream.
When Eczema Wasn’t Just Eczema
We started weaning towards the end of five months, we had our reasons but I’m aware the general advice is to start from 6 months. With every food, it felt like Russian roulette – would she vomit, would her skin flare? She got red, inflamed, itchy, and I just stopped giving her anything that seemed to trigger it. The list of “safe” foods shrank. Wheat, oats, eggs, dairy, soya, nuts, tomatoes, grapes, strawberries, bananas, apples, aubergine, avocado, lamb, beef, prawns, cocoa …cinnamon– nearly everything seemed to set her off. Her meals were bland and repetitive, and every outing meant packing a bag full of safe snacks, just in case.
On many nights, after feeding her something new, she was up all night scratching and crying. I’d moisturise her, bandage her, try every cream (natural and prescribed), but nothing really worked. I was terrified of steroids – I’d heard stories of thin, damaged skin from long-term use – but when her eczema became severe, we had no choice. Antihistamines, steroids, emollients, vitamin D, probiotics, you name it. Sometimes something helped for a week, then it made things worse. Leyla would scream, “Mummy, it burns!” or “Don’t put that cream, it stings!” I had to hold her down to moisturise or bandage her. The guilt was overwhelming. I would be up for hours just trying to settle and soothe her back to sleep, I was running on coffee and prayers.
Travelling with Allergies: A Bag of Fear
Travelling became a military operation. Even visiting my mum, ten minutes away, meant hauling bags of creams, medication, scratch sleeves, bedding, and safe food. On one visit, my mum asked us to stay over, the kids were excited so I agreed. I woke up at night to go to the bathroom and when I returned I found Leyla sitting up in bed, trousers off, scratching her legs furiously. There was blood everywhere – on her pyjamas, the sheets and all over her legs. She’d managed it in the few minutes I’d left her, even with scratch mittens on. I broke down, crying my eyes out, and Leyla looked at me and said, “I’m sorry, mummy.” That broke me even more. My little girl, apologising for her pain.
We tried going away for a family visit down south. A day or two before, I noticed some odd scabs on her tummy and ankle. The dermatologist prescribed antibiotics, but the pharmacy near ours didn’t have it, so I had it sent to a pharmacy near my aunt’s. A couple of days later, Leyla went from a few scabs to a full-body infection – crusting, oozing, fever. She was shaking at night, sweating, crying out in pain, then falling back asleep, only to wake up screaming again. I had to call 111. My husband took her to the hospital in the morning. They admitted her and put her on IV antibiotics. She was limp, feverish, and not herself. I genuinely thought she might have sepsis. I was scared for her life. Because I was nursing my youngest, my husband stayed with her in the hospital. I felt utterly helpless – she always wants me when she’s poorly and even when she’s not, but I couldn’t be there. When she came home, she had another infection, this time mainly on her neck. The oral antibiotics made her face swell up. We had to call the GP again to get a different one. I can still see her, shivering and looking up at me with fear in her eyes, whimpering, “Mummy, I’m so cold, it hurts.”
Living with Food Fear and Constant Vigilance
Since then, life has been a cycle of anxiety and preparation. Every outing means packing safe food, medication, her Jext pen, and all her creams. Travelling is a whole operation – we even have to make allergy cards in the local language, just in case. Still, even with all our preparation, things can go wrong. I can’t forget what happened at a Korean BBQ restaurant in Malaysia. We’d gone out, having explained Leyla’s allergies in detail to the staff and to the waiter, who was very understanding. We were carefully cooking all the safe foods for the kids first, double checking everything, when the lady who seemed to be the owner or manager came over, probably trying to be helpful. She suddenly started cooking for us, and before we knew it, she added sesame chicken to the grill. We immediately panicked and told her to stop, pointing at the sesame and explaining again about Leyla’s allergy. There was a language barrier, but the waiter quickly intervened, swapped out all the contaminated food and equipment, and explained the situation to the lady. After that, she left us alone, but for the rest of the meal, my heart was in my throat. That incident really hammered home how, even with all the vigilance in the world, you can never fully relax. At home, every label is checked, every meal scrutinised. She’s only allowed to eat in certain houses, and even then, we double check every ingredient. Despite all this, Leyla still reacts. Her dust mite allergy means there’s only so much you can do – even with all the cleaning and air purifiers. When she flares, she scratches uncontrollably, many times until she’s bleeding. Calming her down can take an hour or more. The screaming during baths or moisturising is so intense, I sometimes worry what the neighbours must think. I’m surprised I haven’t been contacted by social services!
The Big Scare: Food Reactions
We started to reintroduce foods, but I was always on edge. I carried a bag of safe snacks everywhere, and Leyla knew she couldn’t eat takeout. We’d make homemade versions, but sometimes as she got older, we took risks. One day, we tried fries from Five Guys (fried in peanut oil) – she was fine. Next, a burger takeaway, I thought it’s a handmade patty so not too bad; we excluded cheese, sauces and salad – she loved it, but her skin went red and itchy. That was our new normal, we didn’t think much of it. Later, she vomited everywhere, and we started to wonder if it was the sesame in the bun or if she had over eaten.
Then another time, she tried hazelnuts, and within minutes, she was vomiting, covered in hives, lips swollen, eyes puffy. We gave her cetirizine and contacted 111 who referred us to an out of hours doctor, who couldn’t do anything for her nor refer her to anyone, it felt like a waste of time. We contacted our GP but the advice was just to “avoid the allergens.” No testing, no referrals, no real support, just constant fear.
The Private Allergy Journey
Eventually, we made the decision to go private.
The Alex2 allergy test confirmed severe allergies to hazelnuts, sesame, and European house dust mites. It also showed moderate reactions to several other nuts and a mild reaction to kiwi. Having this confirmation was validating, but it still did not explain everything. Leyla continued to get hives from egg and fava beans, and her skin would flare badly with foods like tomatoes, lentils, avocado, grapes, and chickpeas.
The allergy consultant told us that Leyla was at risk of anaphylaxis and needed a Jext pen. We were also told that we would benefit from seeing a dietician. However, the NHS would only refer us if Leyla began losing weight. So once again, we went private.
Our dietician, Nishti, was a breath of fresh air. She encouraged us to keep a detailed food diary with photos, tracking Leyla’s reactions and skin changes. Through this, we began to notice patterns that had previously been dismissed. High-histamine foods turned out to be a major trigger for her eczema, despite this often being brushed aside by doctors. Just having someone who listened, believed us, and worked with us made a world of difference.
One incident in particular is still vivid in my mind, what I now refer to as the “tomato overdose.”
We had travelled for a family funeral, and to make things easier, I batch-cooked spaghetti with tomato sauce for the children. Leyla had ‘tomato’ at both lunch and dinner for two days in a row. On the morning we were due to leave, she woke up with a puffy, blotchy face and angry, inflamed skin. After that, we cut tomatoes out completely for months.
Moments like these taught us how easily triggers can build up, how quickly things can spiral, and how much vigilance is required just to keep her comfortable. And while the test results and professional support gave us answers, they also marked the beginning of a deeper, heavier journey, one that affected not just Leyla’s body, but all of us emotionally.
The Emotional Weight: What People Don’t Realise
Let me start by saying this. I know most people are well meaning. Most people just want to help. I get it, and honestly, I would probably do the same if I were in their position. To those who have shared links, offered suggestions, or given advice, please know that I do see the care behind it, and we truly appreciate the love and concern.
But sometimes, words still hurt.
Over the years, people have said things to us in jest. Nothing malicious, nothing intentional. But after everything we go through, the lack of sleep, the constant learning, testing, trialling, the cries and the daily battles, sometimes that one comment is enough to tip someone over the edge. I have quietly cried because of people’s words. I have felt defensive over our choices. People often think they “know,” but the reality is, they don’t. Even two children with the same conditions and allergies can have completely different triggers and respond differently to medications. They are not the same.
I started recording my daughter, not just for the doctors, because even there it sometimes feels like no one truly realises how bad it gets, but for family and friends too. Not for attention, but because it often felt like people thought we were exaggerating. It’s just eczema, right?
Most of my family have witnessed how severe it can get, but sometimes I still send videos so they can really see it. So we can all be more patient, with Leyla and with me.
This constant need to explain, clarify, and justify spills into other areas too. I want to gently mention Leyla’s dust allergies, because this is something that can so easily be misunderstood. I will be honest, it is something I overthink a lot. There are times I find myself biting my tongue, worrying whether I have said the wrong thing or accidentally offended someone.
Dust mites are everywhere, even in the cleanest of homes, and reactions have absolutely nothing to do with cleanliness. If I have ever mentioned that Leyla may have reacted to dust while being in someone else’s home, please know it was never meant to cause offence or imply anything negative. It was simply me trying to make sense of possible triggers for her symptoms. We are always so grateful for the kindness, love, and hospitality shown to us, and I hope that always comes across.
As my husband and I try to be more conscious about food choices for our children, especially in the first two years, we aim to keep things as organic as possible and avoid processed foods and excess sugar. We have had many jokes made about this. I get it, we are “different,” we are “extra,” and people are “just joking.”
But when someone is running on very little sleep and dealing with constant stress at home, it can slowly wear them down. Do not be surprised when they start to withdraw from social gatherings.
I have had people comment that despite being so careful and avoiding so many things, Leyla still ended up with these conditions. Some even suggested it might be because we avoided things in the first place. I know people do not mean to be hurtful, but it does hurt. I am human, and it hurts.
For a long time, I felt the need to constantly educate people or explain ourselves. But most people do not really process the response, so it felt like saying the same things again and again. Eventually, I stopped responding. Those small comments cut deep. That is not being overly sensitive. That is having too much going on already. If a comment is not beneficial or based on evidence, sometimes it is better left unsaid. Not everything needs to be voiced.
My body was constantly in fight or flight mode. It was never truly relaxed. I would randomly start crying, and over time, things only got worse.
After nearly two years of trying different medications, supplements, natural creams, and tools, it became expensive and overwhelming. I tried almost everything. Sometimes natural remedies seemed to help at first, but after a while, Leyla’s body would stop responding to them. Nearly everyone sent links, testimonials, and suggestions. “It worked for someone I know.” “You never know.” It became too much.
No one really knows how many things we have tried, or how much money we have spent on products that were only used a handful of times. It affected me deeply. I became numb. I did not want any more well meaning advice. There is a difference between casually mentioning something in conversation and bombarding someone with links and information, most of which we had already researched ourselves.
Looking back now, I know it all came from love. People cared about us and about Leyla. But this journey has taught me how heavy words can feel when someone is already exhausted, overwhelmed, and running on empty. And while this has taken a toll on us as parents, it is only one part of the story. Because beyond what it has done to us, there is the much deeper reality of how all of this impacts Leyla herself.
Leyla: Beyond the Symptoms
With all she goes through, Leyla is still the funniest, kindest, most sassy little girl. She asks the most profound questions, like “Will I have allergies in Jannah, mummy?” and prays for Allah to take her eczema away. Even when she’s in pain, she tries to smile. She’s wise beyond her years. She’ll stare at me through tears and say, “Mummy, help me,” and I wish there was more I could do.
Leyla has started to become more conscious about her skin, it has impacted her in ways I didn’t expect till she was a little older. She is aware that she is different, she knows she has to check whether she can eat something- she has said on many occasions how she wants to be able to dress up like a princess and unfortunately those kind of frocks and gowns are not suitable for her skin. Whenever she wears something even with cotton long sleeved tops underneath, within a short time she is scratching and her skin becomes irritated. If only there were more eczema friendly princess gowns on the market!
We signed her up for martial arts with her brother and within a few sessions Leyla was refusing to go. She was hiding when it was time to leave the house and would scream and tell us she didn’t want to go. In the car she would scream at the top of her lungs as if someone was hurting her and we just didn’t understand. Then after one incident where it all got too much, my husband asked her more and tried to understand why she was doing this- Leyla’s response made me cry and hurt even more. My little baby said that she didn’t want to go to martial arts because people were ‘staring at her’….. We asked a little more… ‘When I scratch people keep looking at me and I don’t like it’. She felt as though people were looking and laughing, at 3 years old she was so aware of how it makes her feel, she knows that people see her. We tried to explain that people were just looking in that direction because all of the children were taking part and they were impressed with their moves- not that people were specifically looking at her scratching. It took a lot of convincing to do but we’ve had to cancel martial arts for now but for the last few sessions she agreed to attend and watch her big brother and if she wanted to join in she could. She at least agreed to this.
And yet, despite all of this, Leyla remains Leyla. Gentle, funny, thoughtful, and full of love. Her strength humbles me daily, even on the days when the world feels too loud and her little body feels too uncomfortable to carry it all. As her mother, my greatest wish is not just for her skin to heal, but for her to always feel safe, confident, and seen for who she is, not what she is going through. And while this journey has shaped us as parents, it is only one part of a much bigger picture, one that also involves navigating a system that often feels slow, fragmented, and overwhelming.
Navigating the System and Moving Forward
We are finally starting the egg and milk ladder again, after years of waiting for NHS referrals. The skin prick tests and blood tests do not always show the allergies we have witnessed reactions to, so we document everything. We keep diaries, take photos, and ask for referrals again and again. The waiting is long, and at times, incredibly disheartening.
We have tried nearly every treatment available. Methotrexate, a chemotherapy drug. Endless steroid creams. Countless moisturisers. Now, we are hoping that Dupilumab will bring some relief. What makes managing Leyla’s allergies and eczema even more overwhelming is the lack of consistent guidance. One dermatologist prescribed alimemazine for her itch, four times a day. A private allergy consultant suggested Piriton at night. An NHS allergist advised us not to bother with antihistamines at all. In all honesty, they do not really help her, so I understand that advice too, but it leaves you wondering what else is there.
Through it all, I have learned that I have to keep advocating for Leyla. I have to keep records, ask questions, push for answers, and trust what I see with my own eyes. Her reality should never be dismissed, even when it does not neatly fit into test results or clinical boxes.
To Other Parents
If you are reading this, please know that you are not alone. This journey is exhausting and all-consuming, but it does get easier. If you are able to go private for answers, do so. If not, keep pushing within the system you have. Write diaries. Take photos. Ask for second opinions. Do not be intimidated. Your lived experience matters more than you may be led to believe.
Thank you for taking the time to read our story. If even one parent feels less alone after reading this, then sharing it was worth it. Please keep the comments kind and thoughtful. My children, and their cousins, will one day read these words.
If you would like to follow our journey through eczema, allergies, and home education, you are more than welcome to join us. There is always room here for empathy, honesty, and community. 🤍