For this week’s Allergy Stories, I’ve interviewed Chloe, whose son Tom has multiple food allergies.
Thanks Chloe for taking the time to do this interview!
Thanks for the opportunity for me to speak about my son’s multiple food allergies on Dairy Free Kids. We are based in Buckinghamshire, UK.
How did you first find out that Tom had multiple food allergies?
The first signs of Tom’s food allergies were there from 2-3 months old. At that time we had no idea it was all related, but of course looking back it’s easy to see the signs. Early on, Tom had quite bad eczema and a rash with small red dots all over his body and no amount of cream or oily baths got rid of it. We spoke to our GP and were told to keep using emollient and bath additives, I didn’t realise that this was actually a reaction from the cow’s milk protein allergy, that was being triggered by the dairy coming through my breast milk; we just thought it was a skin condition. When he was 4-5 months old, we first started weaning Tom and tried baby porridge. Just giving him a teaspoon resulted in a red, itchy rash around his mouth, we tried two different brands with the same result, so switched to baby rice which worked fine. Again, we had no idea at this stage we were dealing with CMPA.
When he was five months, I gave him a little formula and on our first try, after a few drops, he had an anaphylactic reaction. His face immediately began to swell, his airway started to close and he began to choke. I immediately called 999, and the paramedics were with us in minutes. They gave Tom an adrenaline shot and anti-histamine and by the time my husband made it home Tom was stable. It was incredibly scary, but it was great to know the Emergency Services were there when we needed them.
Tom and I had to spend the night in the hospital where they carried out a number of tests and in the morning the paediatric consultant diagnosed Tom with a cow’s milk protein allergy. We were given anti-histamine and two Epipens after our first out-patient appointment with the dietician.
Over time, as weaning went on, so did trying out allergen food groups. At around six to eight months, we found he was allergic to both fish and egg and over a few months, he had a gradual allergic reaction to aubergine and tomatoes. Each time he had a reaction to a food, I would give him anti-histamine and as Tom’s case was becoming more complex and I needed professional support, I contacted the hospital again where he was given blood tests. We will soon be discussing these and the possibility of being referred to an allergy specialist service. Is Tom in childcare? How did you find leaving him in someone else’s hands when he has so many food allergies?
Tom, now 1, has just started nursery. When I looked around the nursery, the manager reassured me that they had a child with allergies similar to Tom and they have routine processes in place. It is not easy for me and I do have the phone close by, expecting a call that there has been an incident whereby there was accidental contamination and he has had a bad reaction. I try not to think about it but I have to trust that those looking after my son take the matter seriously.
Sometimes it can be quite difficult to diagnose and get support for allergies. Did you have good support from your doctor/allergist?
As Tom had an anaphylactic reaction, it was an immediate diagnosis. Since then the support received has been fantastic. We have seen paediatric dieticians, he has a paediatric consultant and we have had training with a paediatric nurse on allergies and how to administer Tom’s medication, which Tom’s nursery key worker has also received. The paediatric unit are a phone call away and always happy to help. Our GP practice’s health visiting team has offered much support and have given us a home visit with information they could find about allergies. However, as severe food allergies are not commonplace, I feel the information and support given to us is limited but this can’t be helped. Allergies themselves are a mystery; it is not clear as to why some people have them or how long someone can have them for.
One area that could have been supported much better was advice regarding breastfeeding. At the beginning, I was advised not to abstain from dairy as I needed the proteins and fat, but my instincts told me to cut it from my diet. I’m glad I did as my son’s eczema and red-dotted rash, which was all over his body, disappeared within days. I was not given any information about my dietary needs as a dairy-free breastfeeding mother and in the end I researched this for myself, getting my proteins and fats from other sources such as nuts and vegan protein shakes and bars
What did you find most difficult about putting him on a free from diet?
At the beginning, it was difficult as Tom was reacting to non-dairy foods as well. However, over time, we understood what his needs were and once his dietary requirements were clear, we knew what his ‘free-from’ diet should look like. The most difficult thing about Tom being on a ‘free-from’ diet is having ideas on meals for Tom which meet his dietary needs, are varied and tasty and the whole family can eat. Luckily my husband and I both enjoy cooking and prepare our meals from scratch, so we can normally come up with something interesting for him. Tom’s favourite meal is chicken, either roasted or shallow fried in some herbs, along with home-made chips and some greens. He loves his food and has an incredible appetite – he’s currently in the 91st percentile for his weight!
Have you a favourite free from product?
My favourite ‘free-from’ product is Violife. It has meant Tom can feel like he is eating the same as us as he is getting to the age where he realising if he is eating something different.
Is there one product you wish you could find for your child what would it be?
For Tom, the soya yoghurts we have are in large pots and I wish we could find small pots of dairy-free fromage frais, perhaps branded and endorsed by popular cartoon characters.
Do you find your family and friends understanding?
My friends and family are sympathetic and understanding but as they don’t live and breathe allergies, I keep an eye out for any unfinished drinks of milk/tea/coffee left on the side within his reach and food left on the floor or on chairs that he can’t have. As Tom is walking now, the next step for me is dealing with Tom’s needs at parties and in social situations where things are a little more out of my control.
How do you find eating out with a child with allergies?
Eating out has been hard. We have always explained his needs to the staff and even so, there have been a few incidents, luckily the anti-histamine sorted it out. We go to a local village pub where we talk to the owner rather than chain restaurants as we have had mixed experiences with these. The past two times, my son has had bad reactions to a plain meal of chicken and plain pasta, which we can only put down to cross-contamination.
Did you and your family go free from also?
When Tom was 5 months and first diagnosed with CMPA, we were both dairy free. Over the past 7 months, I have learned a lot about plant-based calcium and drinking cow’s milk, which I had never questioned before as it is so engrained in our culture. I have enjoyed learning more about food and we now eat a wider range of foods.
The anaphylactic shock on the first taste of formula sounds terribly scary, you are so lucky that emergency services got to you so fast. While it is due to very scary circumstances, it is wonderful to hear a story where you have got great support and help for Tom’s needs right from diagnosis. You are so right about the nature of allergies being a mystery and the limited information being given.
I would agree with you on the smaller yogurts, my boys have grown into them now but some more choice would be great! I can identify with the eating of a wider variety of foods due to learning so much about what is actually in food. I think we are all healthier as a result. Thanks again for taking the time to talk to me for dairy free kids and best of luck to Tom with his referral to an allergy support specialist.
If you would like to take part in this interview series of real life allergy stories on dairy free kids, please drop me a line laura @ dairyfreekids.ie