The emotional impact of allergies; Erica, Jack and Olly’s story

Erica, Jack & Olly’s story

I’m Erica (aka The Allergy Health Coach). I have two sons – Jack, aged 7, and Olly, aged 5.

Jack has IgE (immediate reaction) allergies to cashew, pistachio and hazelnut. He has non-IgE (delayed reaction) allergies to dairy, soya, eggs, wheat, gluten and coconut. He recently out grew of an allergy to beef, and he also has asthma.

Olly has non-IgE (delayed reactions) allergies to dairy, soya, eggs, wheat, gluten, coconut and beef. We are awaiting skin prick tests for all nuts. Olly also has asthma, and has outgrown a number of other non-IgE allergies.

Can you tell us about your journey to getting a diagnosis for Jack’s allergies?

Symptoms

Jack had reflux, eczema, poor sleep in the day (he slept a lot at night but we were told he was lethargic due to lack of feeding). He also had mucus in his stools, diarrhoea and constipation off and on. He was very windy, hated feeding with arching of back & legs to tummy, sickness, facial swelling and poor weight gain.

As he gets older, his emotions are an early sign of a reaction. He gets extremely angry and upset, breaking things in the house, physically hurting me and confused emotions. He is a sweet caring child so it is very out of character.

Where I went for help

Unfortunately Doctors kept ignoring me. They told me I was an anxious first time mum, I was tired and stressed. A friend suggested reflux initially, which the doctor prescribed Gaviscon for. It was a waste of time as it made him constipated with more pain, and he had to be given lactulose. Omeprazole was next. I went to 6 different doctors before someone properly listened to me. Jack’s weight gain was very poor and he lost weight some weeks. A chiropractor friend was brilliant at helping ease digestion and reflux issues.

Challenges along the way

Working out which milk was suitable was hard. I was told to stop breastfeeding as they said my milk wasn’t good enough. Formula wasn’t the easy option and, after trying a few, settled on Nutramigen. We moved to France when Jack was 4 months old and the doctor there told me Jack’s pain was all my fault because I was stressed. They didn’t take me seriously. I had to work out weaning on my own and moved back to the UK. I still felt support was lacking and did a lot of it on my own with my husband. We were in and out of hospital with Jack’s breathing and eventually they said he was asthmatic, and we got inhalers and tablets for that. I gave him a mouthful of a snack bar that had a nut in it when he was just under 2 and he had an anaphylactic reaction, which we were taken by ambulance to hospital for. We then got given auto injectors.

How Jack’s allergies are managed now

We are free from all his allergens. The house is a nut free house (my husband has a brazil nut allergy too). Jack has inhalers and tablets for his asthma, but thankfully his asthma is a lot more controlled now. For parties I make party food and take it for the boys. They have packed lunches for school, and their medication goes everywhere with them.

And what was your journey to getting a diagnosis for Olly’s allergies?

Symptoms

Silent reflux, eczema, sleeping for maximum 20-30min stretches at night for 9 months. He had mucus in his stools, diarrhoea and constipation off and on, was very windy and hated feeding. Like Jack he was sick, and had poor weight gain. He was also snuffly & congested.

Where I went for help

The doctors were quicker at helping me this time round but I still felt like I was on my own. Facebook groups helped (but also made me feel worse sometimes). We tried alternative medicine remedies, but they didn’t help much. We have been to a functional doctor who was great, but it is expensive, and we couldn’t afford it any longer. A chiropractor also helped loads. I lost trust in the medical system, although we have a nice paediatrician who speaks to us once a year. I am still on my own with most of it.

Challenges along the way

I breastfed Olly until he was 9 months which meant I couldn’t eat all the foods he was reacting to. I was also extremely exhausted because of his poor sleep and the worry of trying to help both my boys. After 9 months breastfeeding Olly had Alfamino, but it took us a while to get there, trying other milks on the way.

How Olly’s allergies are managed now

Same as above for Jack. We are still waiting for skin prick tests for nuts – we have been waiting nearly two years and no sign of it happening soon. He needs moisturisers for itchy skin.

The weeks and months after having a baby are such a vulnerable time for new mums, and allergies can make this especially challenging. How did your children’s allergies affect this period for you, and what would you say to help other mums in the same position?

I suffered post natal depression with both boys. I doubted myself constantly, I thought I was going crazy and didn’t think I was a good enough mum. It seemed like all my friends could feed their babies no problem and I couldn’t. I got very lonely and tried to go to breastfeeding groups but always felt like an outsider.

I have never cried so much as I did in those first few years. Drained and exhausted and wanting to do the best for my children, constantly fighting against the system to get help and wondering why no one would help us. I didn’t know anyone else who was going through what we were and every time someone suggested something to help (that I had already tried loads) I started to not talk about it with them. 

To other Mums going through a tough time, reach out and surround yourself with the right tribe. This isn’t always the people that know you best, but people who are going to give you the confidence and empowerment to keep going each day. Someone you trust who gets it. If your instincts are telling you something act on it and be confident with it. If someone you go to doesn’t help or support you in the way you need, find someone else.  

Often it’s the little things we learn day to day as parents that are most helpful for others who are new to living with allergies. Can you share some of the things you have learned which might help to make life easier for other parents?      

1) Give yourself time each day to do something for you. Whether it takes 1 min or 30 mins, whatever you have time to do. If you are topped up and feel better in yourself, you will have more energy and fight to tackle your day.

2) Keep a food and symptom diary for your child (and for you if breastfeeding). Gather as much ‘evidence’ as you can about what’s going on. Take pictures of your child’s dirty nappies or their eczema, video the screaming in pain. As much info so that you can’t be fobbed off.

3) Plan ahead if going out to eat. Look up the website to check the menu. Call the restaurant/café before you go and find out what food would be suitable. When you arrive, explain to the staff about your situation. When they take your order check what they have written. Check again when they put the food down on the table. Check check and check again.  

4) Birthday parties – if hosting your child’s party make all the food allergy friendly for everyone so you don’t have to keep watching to make sure your child is safe. Keep it simple though. The kids just want to play so the food is usually secondary as long as there is cake!

It can be really hard to think up meal and snack ideas when you are dealing with allergies, and I’m always interested in what other people are cooking to give me inspiration! What are your children’s favourite things to eat?

Sausage rolls – very quick and easy. (See below for an amusing pic by my husband as it’s hard to explain!)

• Gluten Free Jus Roll Pastry
• Pork sausages (most supermarket own brands are safe but check)
• Splash of gluten free oat milk

Get the pastry out before you need to get to room temperature.

Preheat the oven to 180°C. Roll out the pastry. Place two sausages in a line down the short side of the pastry. Cut a couple of cms away from the sausage.

Rub some oat milk along the ‘seam’ before rolling the sausages up in the pastry. Cut into bitesize pieces.  Repeat two more times.

Brush the tops with oat milk and score slightly. Put the sausage rolls on an oven proof tray and cook for 15 mins or so until the sausages are cooked through and the pastry browns.