Navigating Our Daughter's Allergy Journey: A Parent's Perspective

I thought it was about time I shared why this blog exists today! 

My eldest child was diagnosed with cow’s milk protein allergy (CMPA) a couple of months after birth and we subsequently discovered more food allergies when weaning her.

This article shares the fight for a diagnosis, what to expect at the allergy clinic & undertaking a food challenge & how we navigated our daughter's allergy journey over time.

Early Signs Something Wasn't Right

I fell pregnant with my first child, my daughter, and was very lucky to have a healthy pregnancy.

When our little girl came into the world in 2012, I was overjoyed and so in love with this gorgeous little being, however, I noticed things weren’t quite right quickly, I just didn’t know what was wrong.

From the very beginning, I struggled to breastfeed my daughter. I couldn’t seem to get her to latch onto me comfortably & if I could get her to feed, she would constantly choke on the milk.

At first, I thought it was because being a first-time mum I wasn’t breastfeeding properly, so I had some help from the health visitor and was given tips on how to make feeding easier, but nothing seemed to work.

 My daughter seemed in a constant state of distress and cried every minute she was awake, which was sometimes 22-23 hours a day.

I decided to express my milk with a pump and give it to her in a bottle and try formula, because I was worried that she may not be getting enough milk, which could be why she was crying all the time. 

I started to write down how much she was drinking at every feed and what symptoms occurred and when.

The Symptoms

Things just didn’t seem to be getting any better, it was a struggle at every feed to get any milk into my daughter, she had become more and more unsettled as the days went on and further symptoms started to develop.

These included 

• General unsettledness - crying whenever awake
•  Wet hiccups
• Green poo
• Fussing on the bottle
• Eczema 
• Very congested
• Wheezy / Heavy breathing/panting
• Not sleeping - especially on back - could only sleep upright (eg. in a bouncer or car seat)
• Choking when on her back
• Being sick
• The sound of liquid coming up in her throat and then being re-swallowed.
• Arching back when crying
• Grunting and thrashing when asleep
• Frothy bubbles at the mouth

Disclaimer: Please note these were my daughter’s symptoms and should not be used to make a medical diagnosis. Please visit your GP if you suspect your baby has a cow’s milk allergy.

The Many Trips To The GP

I became a regular visitor to my local GP and was probably there about once a week for a good month to 6 weeks as things just seemed to be getting worse.

I felt so helpless that my baby was so obviously in pain and I didn’t seem to be able to help her. 

The sleep deprivation was starting to kick in too and if I am totally honest I wasn’t enjoying motherhood. Surviving on around 2 hours of broken sleep at night for weeks on end took its toll on everyone.

At first, the GP was quite dismissive and said to me that all babies cry and she probably had colic. I then went out and bought every colic medicine I could - but alas nothing worked.

I took my daughter to a cranial osteopath as I had heard that this can be beneficial for unsettled babies, I had high hopes but unfortunately, after an initial great sleep, the unsettledness was back.

I went back to the GP & they said it could be silent reflux. This was something I hadn’t heard of at this point, but when I looked up the symptoms they seemed to match up with my daughters.

They prescribed Gaviscon and I was told to give it a week and see if things improve. A week felt like a year at this point but I was hopeful. The Gaviscon just seemed to make things worse as it didn’t alleviate any of her symptoms and gave my daughter constipation, so she now had an extra issue to contend with.

I went back to the GP again and they then prescribed Ranititdine. (Which I understand has now been discontinued in the UK) which helps to decrease stomach acid, which in turn should alleviate her symptoms.

 We had to administer it 3x times per day via a little syringe into her mouth. It seemed to help a little bit, but she was still struggling to feed, was not sleeping and was generally unsettled.

I went back to the doctor time and time again, but nothing seemed to be helping.

By the way, I am not bashing the GP, she did her best and back in 2012 there was FAR less understanding of cows’ milk allergy than there is now, but I felt emotionally exhausted, helpless and frustrated that I knew there was something not quite right with my baby and no one seemed to believe me.

I felt quite dismissed and a lot was made about being a first-time Mum. One thing I do know is that Mother’s instinct is a real thing and should never be ignored. 

I spoke to my Mum, who spoke to a friend of hers who was a psychiatric nurse on a mother and baby unit - someone who I will be forever grateful to.

She reassured my Mum and explained that it sounded like my daughter had a cows milk allergy.

She wrote down the names of a few infant formulas that you could give when a baby has CMPA and explained to my Mum that I needed to go back to the GP as they are only available on prescription.

 So off I went again, feeling emotionally drained and exhausted as I felt I had been fobbed off so many times before, but knowing I had to fight for my daughter.

The GP didn’t seem to agree with what I was saying and was unconvinced that my daughter may have an allergy to cow’s milk.

After some crying and pleading from myself, she agreed to prescribe my daughter one tin of Aptamil Pepti 1 infant milk, which is an extensively hydrolysed formula.

This is where the milk proteins present have been broken down (hydrolysed) to reduce the likelihood of them causing an allergic reaction.

Off I went praying that this was the solution, little did I know this was the first of many allergies.

❤️ Side note: If you have tried an extensively hydrolysed formula and your baby is still having symptoms, there are infant formulas like Neocate and Nutramigen which contain no milk proteins at all and are amino-acid based that you can be potenially prescribed instead.

The Day Everything Changed

My daughter was born in the September and by this time it was late November. In this time she had never sat happily in her bouncer or car seat, every minute she was awake she was thrashing around in pain or crying. It was heartbreaking to see.

I remember the day like it was yesterday. We were at my husband’s friends house and I had just given my daughter a feed with the new formula.  I think she had been taking it for a day or two at this point.

After feeding and winding her, I placed her back in the car seat, where she sat, for 30 minutes, happy!!

No thrusting, no thrashing, no being sick or bringing up clear liquid, no crying to clenching of fists. Just sitting there looking around, calm, content & happy.

I burst into tears (of joy and relief!). I couldn’t believe it, to see my little girl sitting happily without any pain made my world.

I went back to the GP to explain that I felt like I had a different child and the milk had worked, so please could we have some more of the prescription milk, she seemed surprised but agreed.

We carried on with the prescribed formula and ranitidine and over the next few months she just got better and better.

The eczema on her skin disappeared and she was generally more content and happy.

Weaning Begins

We were advised to wean my daughter, giving her all the normal foods to try, apart from anything containing dairy.

I was very naive to food allergies at this point and wasn’t even aware of the many signs of a reaction or what the top 14 major food allergens were.

I started to introduce different foods, starting with the basics like fruit and vegetables on their own, everything seemed to be fine so I started adding in different combinations.

My daughter used to come out in random rashes, which I spoke to the health visitor about.

She advised that babies can sometimes be sensitive to certain foods and to keep a record of anything that seems to disagree with her and avoid it for a little while until her immune system became stronger.

I noticed that spinach used to cause a rash and that every time she had hummus she would come out with a rash, so I avoided giving her both of these foods.

My daughter was eating baked eggs in foods quite happily, so one day whilst looking after her, my mother-in-law decided to try her with scrambled eggs.

She came out in hives all over her body and her face and eyes started to swell up.

My mother-in-law called me at work and I rushed her straight to the GP who saw her straight away.

He advised me to give her some antihistamine, avoid eggs going forward and that he would refer her to the allergy clinic at the local hospital for further tests.

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The Allergy Clinic - Getting Diagnosed & Allergy Testing

On our first appointment, we spoke to the doctor and explained our daughter’s history with CMPA ( the non-ige allergy which results in delayed reactions) and subsequent reaction to eggs.

They carried out skin prick tests on her which involved placing small amounts of potential allergens on the skin's surface and lightly pricking the skin to see if a wheal appeared.

They then measure the wheal with a ruler to see how big it is. This can help them determine if someone is likely to react to that allergen.

A reaction occurred for milk, eggs, peanuts, a mixture of tree nuts and sesame. Due to my daughter’s age, we hadn’t given her any nuts at this point.

We were given some EPI pen training & a prescription for some EPI pens, (epinephrine auto-injector) it all felt very real and scary now.

They also referred us to a paediatric dietician to help with weaning and we were advised to come back in a year for more tests and were reassured that children can grow out of their allergies, especially milk and egg.

Living With Food Allergies

Going forward I was terrified when it came to my daughter and food. Before the end of 2014 restaurants didn’t have to provide allergy information, so whenever we went out to lunch or dinner I would bring along a jam sandwich for my daughter (her favourite at the time!) so I knew she could eat something that would be safe for her.

We navigated starting nursery, who were really good and understanding of her allergies. I was there at birthday parties, ready with my jam sandwich and dairy-free cupcake, baked by my mother-in-law so my daughter could join in and not feel left out.

Luckily I don’t think she ever felt left out in the first few years as she didn’t know any different. It was only when she got a bit older and started to understand that she wasn’t having the same as everyone else that things became a little trickier and she felt angry and upset that she couldn’t eat the same things as her friends.

She was always so very mature about her allergies and would always check with me at a party if she could eat something or if she was on a playdate she would always ask the friend’s parent if she was able to eat something.

( I of course always spoke with the parents beforehand and explained her allergies, she just always wanted to double check!)

We went back to the allergy clinic every year and they would re-do the skin prick tests to see if anything had changed.

Food Challenges

When the wheals on a skin prick test have reduced to a certain size or do not appear, the hospital will arrange to do a food challenge.

This can either be done at home or in the hospital under medical supervision if they feel necessary. We have done both versions for different allergies.

If the allergy care team feel it’s safe, you may carry out the food challenge at home. This can be done for both egg and milk. The challenge may be carried out at home if the allergy is a non-IGE delayed reaction allergy or if your child has been able to tolerate a baked version of that food.

My daughter undertook her baked milk, tree nuts and peanut challenge in the hospital & the baked egg challenge at home, as prior to her reaction she was able to tolerate baked egg in a cake.

This is such a big topic that I will be writing a separate article on what to expect when undertaking a food challenge but I will give you an overview here.

Hospital Challenge - Baked Milk, Tree Nut & Peanut

Before the food challenges in the hospital, a blood test was carried out. This blood test can measure your immune system’s response to a particular food by measuring the allergy-related antibody known as IgE. 

For the baked milk challenge, we had to take malted milk biscuits with us to try. With the tree-nut challenge, we had to take in a home-baked mixed nut cookie containing a mixture of the nuts that had historically shown up on the skin prick test & for the peanut allergy challenge we used peanut butter and Bamba crisps which are like a peanut-flavoured wotsit.

This cannot be used on its own to decide whether the allergy is still present, but alongside the skin prick test can give the allergy team confidence that the risk of a reaction is low.

When challenging milk, once the hospital challenge was successful we were advised to follow the milk ladder at home until my daughter could tolerate fresh milk.

This took a few goes to complete, if you notice a reaction at any step you have to go back to the previous step for a while and try the next step at a later date.

In the end, she reached the top of the milk ladder and can now tolerate a small amount of fresh milk (although she doesn’t like it and a large amount can still upset her tummy).

Both of the nut challenges were more nerve-wracking for me as my daughter had never actually eaten nuts. When they showed up as a potential allergen on the first skin prick test, we were told to avoid them and given an EPI pen.

But with the low/negative skin prick results the last time they were carried out, (They also repeat the skin prick test in the morning before they begin the challenge) as well as the blood test results they reassured me that the chance of a reaction was low.

When carrying out a food challenge in the hospital, they will feed your child a minute amount of the food containing the potential allergen, check how they feel and take their temperature and blood pressure every 15 minutes, which can help identify sing of an anaphylactic reaction, before repeating the steps again with a larger amount until they are satisfied you can tolerate the food safely.

This is carried out in a controlled environment and the staff all reassured my daughter and myself. I felt she was safe in their hands.

If a reaction occurs at any point, the staff will stop the challenge and medical support is there. 

If all the food is successfully tolerated, you will be asked to stay at the hospital for at least an hour after eating to make sure no delayed reactions occur.

You can expect to be there the whole day sometimes so take lots to do, as you cannot leave once you arrive.

My daughter completed the tree nut challenge back in 2018 and the peanut challenge in 2023.

At Home Challenge - Egg & Sesame

We carried out a sesame & baked egg challenge at home. She was able to tolerate sesame quite quickly and this then became a regular part of her diet.

Trying to navigate the baked-egg challenge alongside the milk ladder was quite tricky, as my daughter was having reactions such as diarrhoea and hives, but we couldn’t work out from which food it was coming from, so we stopped the baked-egg challenge until she had reached the top of the milk ladder when we resumed the egg challenge with success.

What Happens After The Nut Challenge?

As my daughter had successfully eaten both the tree nuts and peanuts (in separate challenges) we were advised to introduce the foods into her diet a couple of times a week for the rest of her life to make sure her body remains able to tolerate them.

 We were also advised to keep the EPI pens for a year after the last challenge as it was still possible that she could react later on down the line, luckily she has not had a reaction and we now do not have to carry EPI pens, which after 10 years of carrying them takes a bit of getting used to.

Birch Pollen Allergy Link?

This is something the doctor mentioned to me after I questioned why my daughter was able to suddenly tolerate nuts & tree nuts, as I thought people didn’t grow out of nut allergies.

Now I’m not a doctor but what she said to me ( and what I have later researched) makes sense. 

The immune system gets confused as the protein in the birch pollen can be similar to those found in major allergen fruits, vegetables and nuts, so the body reacts in the same it would to a tree, grass or plant allergen, which is why nuts and peanuts can show up positive on a skin prick test.

 So a person allergic to birch pollen ( hay fever - which my daughter has) can develop oral allergy mouth syndrome, where they may experience a cross-reaction after eating some raw fruits, vegetables or nuts & get an itchy mouth or throat ( it can sometimes cause more serious reactions but this is very rare).

This totally made sense as my daughter had always said that whenever she ate fresh pineapple, peaches and plums she got an itchy throat and sometimes came out in a red rash around her mouth.

She now avoids those fruits but can eat tinned pineapple without any issues.

Reflection & Moving Forward

If you are still here, thank you for reading!

I feel beyond grateful that my daughter is now free from her allergies as I know first-hand how scary it is navigating this world, whilst trying to keep your child safe.

After so many years of having to watch every single thing she ate, it feels very alien to not have to do that, but it is something I will never ever take for granted.

I totally get the scanning food labels intently to check the ingredients and any “may contains”. 

I understand your worry about letting your child go on play dates, going on holiday or to a birthday party without you and you having to trust in another person to keep them safe.

Thankfully, the awareness and understanding of food allergies has come a long way in the last 10 years but there is still a long way to go.

We still hear stories of “Surely just a little bit won’t hurt them” or  “Sorry this option isn’t dairy-free as it contains egg”

This is why I started The Scatty Mum.

I am passionate about raising awareness for the food allergy community & providing you with recipes that have allergy-friendly options so the whole family can enjoy safely at home.

If you are a parent of a child with food allergies or you have an allergy yourself:

I see you, I hear you & I feel you, keep going, you got this!