The importance of online community support; Ally & Jenson’s story

Ally and Jenson’s story

My name is Ally (@dairysoyafreebubba). My son Jenson, aged 2 and a half, has a cow’s milk protein allergy and a soya allergy.

Can you tell us about your journey to getting a diagnosis for Jenson?

From the early days, Jenson seemed to struggle with winding, bringing up milk and a painful tummy. As it was all a first time experience for me, I thought most of this was normal. Over the first few months, we noticed the amount of spit up was more than we thought it should be, so went to the GP who prescribed us reflux milk.  

This definitely helped him. However he continued to look like he was having tummy pain and would often break out in a red blotchy rash when feeding. At first I didn’t think too much of this. I feel sad to admit this now, but I too get a rash on my upper body and face, which tends to develop either through emotions such as sadness or nerves, or with heat. I thought he was just like me! 

But we noticed it all over his body. It would disappear pretty quickly, but decided to take him to the GP when he was about 4 months old to check further. Luckily for us, he needed feeding at the time of the visit. The GP was able to see the rash instantly. He advised it was a cow’s milk protein allergy. 

I would say it took a good few months before I saw improvements overall. Probably not until after his first birthday did we see improvements in his digestion, his nappies, even in his behaviour. He just became a happier boy! I didn’t realise how much it had obviously been affecting his gut.  

We were referred to a consultant and dietician. I have to say they’ve been fairly good, but I found that the majority of things I’ve learnt is through the Instagram community and a Facebook support page. 

I enjoy cooking and found it easier to cook meals from scratch, so I knew what was going in. To be honest it’s the snacks and ‘take-out’ food I’ve found hardest. Luckily, I’ve found some great accounts online and just double check everything!

Just before Christmas, Jenson had blood tests so we could look at starting the milk ladder, and they came back as negative. We have recently got to step 4 (of the 6 step) which is cheese. It has been difficult. Sometimes similar symptoms to illness/teething can be the same as allergies. We’ve taken it slowly. We took ages on step 1 as I was so nervous, but then got to step 4 quite well. We have struggled due to Jenson being fussy with food lately so trying to get cheese in things is difficult. He seemed to react to cheese, so I’m going to wait and start again soon!

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 Jenson’s allergies affect this period for you, and what would you say to help other mums in the same position?

I found it really hard at first. Not having allergies myself, it was a complete minefield. I found dairy & soya in things I wouldn’t even realise I would have to look at, like gravy or bread for the flour. I also, like most parents, want to make my child’s life as ‘easy’ as possible. It worried me to think he might not have as easy a time, thinking ahead to kids parties and occasions.

However, I found that there is a great community online for allergies. Joining some online groups and talking to people in the same situation really helped. There always seemed to be people who had been through it. They could offer advice and refer to support. Just speaking to people and researching made me more confident in what I was doing and having people who understood.

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 5 things you have learned which might help to make life easier for other parents?      

• Check everything food wise. We found milk in random things like gravy, or sliced chorizo.
• Join online groups for support. There’s so many people who will have experienced it and are willing to help.
• Don’t let it put you off going anywhere or doing anything. There are so many places that cater for allergies now. Don’t be afraid to be specific when eating out.
• If going to someone’s house, kids party or BBQ, take allergy friendly foods, similar to what might be eaten there. Last thing you want is all the kids eating cake or ice cream and your child missing out. Bring something they can have!
• Finally – trust yourself and what you believe. A lot of parents don’t get the support they need but you know your child and keep pushing for answers and tests.

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 is Jenson’s favourite thing to eat?

For a main meal, Jenson interestingly has always loved a curry! Maybe the different flavours excite him, and I found you can be versatile. I often include coconut milk in them.

He also loves baked beans! Snack wise, he loves crackers and bread sticks. He recently discovered beetroot hummus which he loves dunking his bread sticks in!