www.milkfree.org.uk is a website built and run by Leigh Stapleton-Ward, parent of dairy allergic Dylan, because they did not want other people to have the same hard time as they did getting to grips with milk allergy. They hope that by sharing knowledge they can help other parents to work better with their medical team, create safer environments for their children and allow everyone to make more informed and better choices.

Dylan was a happy and relaxed baby with creamy perfect skin and a joy to have - until he was eight weeks old. Then he began to develop dry skin and red sores all over. He became fussy, and sick and we knew something was wrong. The health visitor said he had dry skin, and sent me on my way with a pot of E45. A couple of weeks later I took him to the doctor, who said he suffered from eczema and prescribed steroid creams. Over the next 5 months these gained in strength but failed to overcome his problem while the eczema skincare routine just took over everything in our house.

I had been breast-feeding Dylan but noticed that after each feed his face would flare up and his cheeks peel, as if the milk was acidic on his skin. I decided to wean him to formula. While trying to find a suitable one we tried him with a lactose free product. Within one week his skin had improved and he was suffering far less discomfort at meal times. This was the first time we thought of food allergy. A visit to a specialist confirmed he has milk allergy, with eczema as a secondary condition, irritated further by milk. He was 18 months old before he was diagnosed properly; he is now 2.

Dylan is so sensitive to milk that we have all gone milk free and allow no milk in the house to prevent accidental exposure. It has been hard on all of us, especially his 5 year old brother, Ethan, who cannot have his favourite ice cream or milkshake as it’s not fair on Dylan.

Dairy Free Living

It took some time to relearn eating habits, to learn to read labels and recognise where milk products may lurk. Even pre-packed meats can contain milk proteins and lactose! We reverted to a diet of less convenience food and more whole foods, cooking most of it ourselves from scratch. This is really the only way to know that absolutely no milk is in his food. We can't have fast food, or eat out as a family unless we can guarantee there will be no milk in the food and no risk of cross contamination. Friend's birthday parties are another minefield, as will be school dinners when Dylan is old enough to go to school. One way and another the boys miss out on a lot.

Other People's Attitudes

Another result of Dylan's allergy that has really hurt is other people's reactions. From my work with our website I know I’m not the only one who feels like this. We have had some very hurtful things said to us - some even by members of the medical profession you would think should know better.

I have had people stare at my child in the street and with out knowing anything about me, or my son, say: 'Just look at the state of that baby. Can't she look after her child properly.' Another classic, when someone asks what is up with Dylan, is: ‘'How can you be allergic to milk, it's good for you! You are just being silly.'

One member on our site was told by her health visitor that milk allergy didn't exist! Another was told, by a health professional, that there was 'nothing wrong. He is just a sickly baby. Don't look for problems that are not there.' Members of the medical profession can truly be ignorant. No matter how hard you try to ignore them, the comments hit home and you begin to feel bad as a mother for somehow failing your child. You start not wanting to go out because of the constant comments and questions for which you have no answer.

Future Allergy Care

The Royal College of Physicians' report (Allergy, the Unmet Need) put their full professional weight behind a view which so many of us have held for years, namely that the increase in allergic illness is growing to epidemic proportions, that resources to treat it are woefully inadequate and that it is high time something constructive was done about it.

We would like to see not only their recommendations implemented (regional allergy care centres, more consultant allergists, more training posts and long term allergy services led by GP practices) but all medical staff, not just GPs, getting allergy training so that they understand some of the practicalities of being allergic to things like food. When we looked about for support and advice when our son was first diagnosed we found nothing in our area, and very little nationally. That is why we started Milkfree Kids (www.milkfree.org.uk) to help others in the same boat as us.

On the site we have a recipe database that members use, plus book lists, reading suggestions, forums to enable members to support each other, news, articles - and we organise live chats for members too. The response to the site has been amazing. Knowing others are there and can relate to your problems is always helpful. Knowing someone else out there has been through what you have and can offer help and practical advise is even better!

As Dylan grows our biggest problem is going to be to teach him to look out for himself. Food advertising that generally targets children promotes foods, which are highly processed, and full of additives including milk and its by products. He will have to learn to avoid making bad food choices. He is going to have to avoid the temptation of the tuck shop at school, which to him effectively a shop full of poison, chocolate and crisps being full of whey, lactose and other forms of milk. Then he is going to have to learn to overcome that feeling of being different. Hopefully things will get better and there will be more understanding of allergy generally but I'm not holding my breath.

First published in 2004

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