Guest post: Living with allergies - "It's terrifying to think your child could die from a sip of milk"
Emma Amoscato says her children's severe allergies mean meticulous planning and constant worry - but this doesn't stop them leading full lives
Free From Farmhouse
Posted on: Tue 10-Jan-17 12:59:31
(24 comments )
What scares you? A discarded ice-cream pot at the park, a sticky-fingered toddler at soft play, or a slice of cake offered by a well-meaning relative? These things are all terrifying to me, because they could kill my children.
That may sound melodramatic, but it is my family's reality. My two young children both have life-threatening food allergies that include milk, egg and nuts. They react on contact and eating the tiniest amount can cause a severe reaction. When my son was 15 months old, he took a sip from another child's milk bottle. His airways began closing up and within minutes he was struggling to breathe. Luckily, we had already been prescribed an Epipen and we were able to save his life by injecting him in the leg with adrenaline.
In the last decade, cases of food allergies have doubled and 6% children have a proven food allergy. Many children, like mine, start showing signs very early. My son was a very unhappy baby: he cried all the time, didn't sleep and had terrible eczema. These are all common symptoms of food allergies in young babies. Unfortunately, it can take a long time to get the support and diagnosis that so many parents desperately need. There are not enough allergists in the country and there is limited understanding among GPs. Even when my daughter was born and was showing the same pattern, I still had to fight for a proper diagnosis and it took seven months and a severe reaction to be referred for testing.
A little understanding goes a long way. We have amazing friends and family who go out of their way to cater for my children, a nursery that makes all their activities safe for my son and a food allergy community that has offered much-needed support.
On a day-to-day basis my children are happy, healthy and lead lives like any other pre-schoolers. They love puddle-jumping, chocolate cake and Peppa Pig. However, everything we do comes with a little more planning and consideration.
We don't leave home without their Epipens, inhalers and antihistamines. They both have care plans in place and we liaise closely with their nursery and childminder to keep them safe. Every social activity, from parties and meals out to visiting friends' houses, involves an added level of research and worry. We try to continue life as normally as possible; we're off on holiday this week. Of course, this has issues of its own – getting the right insurance, translating their allergens and care plans, packing enough food supplies, and flying safely.
We've had all the common responses – "No-one had allergies in my day" (they did, but most were undiagnosed, or deaths were treated as asthmatic). "You're being overprotective. A little bit won't hurt them" (yes, it will). "It's because of c-sections/bottlefeeding/being too clean" (my children were born naturally, breastfed and we live on a farm). The fact is, no-one really knows what causes food allergies or why they are on the rise. People on both sides of our family suffer from allergies, asthma and eczema, so I'm fairly certain ours are genetic. The reality is, however they were caused, we have to live with them.
It is anxiety-inducing, overwhelming and terrifying to live with the thought that your child could die from something as simple as a sip of milk. But a little understanding goes a long way. We have amazing friends and family who go out of their way to cater for my children, a nursery that makes all their activities safe for my son and a food allergy community that has offered much-needed support. My son starts school in September, which will bring a whole new set of challenges. As he gets older, we are trying to teach him to understand and manage his condition. While we will always take our own precautions, allergies are relentless and reactions can happen in seconds. There are many simple things people can do to make life safer for those with allergies. Washing hands after eating, wiping surfaces, keeping food separate to play and always asking before sharing food all make a big difference.
We are hopeful that our children may outgrow some of their allergies and that in the future there may be more accessible treatments available. For now though, we will keep trying to make people allergy aware, we will keep campaigning for better understanding from healthcare professionals and we will keep battling to keep our children safe and included so they can face the world fully with food allergies.
By Emma Amoscato
Hi Emma, I really sympathise and empathise with you. My daughter, now nearly 17 was diagnosed with severe milk and egg allergy at a year old approximately. Nothing we have tried has worked, desensitisation therapy etc.
If anything her reactions have become more severe as she has got older.
People used to say to me it will get easier as she gets older, but no, it doesn't, it gets so much harder. As she grows up and becomes more independent I am no longer in control of everything she eats and drinks. It is a fact that most severe, life threatening reactions occur in the teenage years.
I frequently get extremely frustrated as everything you read in the press is focused on peanut allergy. There is extreme ignorance around milk and egg allergy. Eating out is virtually impossibl.
I hope things do improve for your little ones and yes, there is a very good chance they will grow out of it. True milk allergy which remains into adulthood is very rare.
Clear something up for me please.
When you say "milk allergy", do you mean cows milk?
Or is it any milk, goat, sheep etc, and include breast milk?
If so, how do they survive the first few months until weaning? Formula with any milk protein replaced by soy or something?
Yes cow's milk allergy.
There are hypoallergenic formulas available, however my DS still reacted to the first one we tried, and the even more specialised formulas were so disgusting that I breastfed him until he was 2.
My son had Farleys Soya Milk from a few months old, it was brilliant and he was never sick. No allergy whatsoever.
My ds had CMPA when he was born
Not as severe as yours but still hard to manage
After fighting for months with the doctors, having a baby that screamed with pure agony all the time and no sleep he finally got diagnosed.
Not before he suddenly stopped eating, refused to take any milk and the doctor didn't want to help at first because "babies can go 3 days without fluids"
When he was finally admitted to hospital and a new formula introduced he was a different baby within 24 hours.
Now at almost 2 he has thankfully grown out of it
Allergies need more help at a young age
Soya formula is no longer recommended as it can have a detrimental effect on boys' fertility.
My daughter is 4 in February and still highly allergic to milk she thankfully outgrew her egg and soya allergy which makes like a bit easier. I'm newly pregnant and asking that million dollar question will the next baby have allergies? I so hope not. It was so hard I struggled to breastfeed and didn't bond with her until she went on to nutramigen at 6 months after I poisoned her with formula after a low point. It was as if she hated life until her allergies were diagnosed.
It's not just the threat of anaphylactic reaction it's her excema and asthma to deal with too. My poor love.
My 4th daughter has life threatening allergies to milk and peanuts. She outgrew her egg allergy just over a year ago. She sadly failed her milk and peanut challenges within minutes of starting them. I am hopeful that one day she will outgrown her milk allergy. I have enough knowledge to know that peanut allergy will likely stay forever.
Yep, am also in the CMPA gang with my 8 month old. Lucky enough to be under a great allergy consultant and have made definite progress in the last 6 months. Hoping he will grow out of it. As a breastfeeding and therefore dairy free mum, there's actually lots of options for dairy free food, and getting better all the time x
I am allergic to milk. I get cheesed off (ha ha) by people telling me I am "lactose intolerant" which is something different.
The worst places to eat out are other people's homes. You feel uncomfortable quizzing about ingredients. My MIL almost poisoned me once. She insisted there was nothing dairy in the cake she had made especially with me in mind and was getting irritated with my questions. I'm glad I persevered because she revealed it contained Flora.
I totally relate to your post. My son is 9 and still allergic to cows milk, eggs, nuts, peanuts and all other legumes and also sesame. It has become easier in this country as the laws have improved to ensure restaurants have allergy information easily available.
Most people look forward to holidays, but I'm consumed by anxiety when going on ours. I don't let it show though, and we try and make everything as normal as possible, while ensuring he understands what he checks he needs to do - slowly preparing for independence.
I completely sympathise and empathise with you. My ds is severely allergic to dairy and egg and it can be a nightmare. As you say eating out is challenging. While the vast majority of restaurants are helpful, there can be a lack of knowledge. The amount of times we've been reassured that the bread is gluten free (completely irrelevant to us) is unbelievable. Some people don't know that dairy equals anything with cows milk in. My ds hasn't started school yet but I know we'll be on pins when he does because of him having lunch there.
Really thought provoking and truthful post.
Message withdrawn at poster's request.
apologies,posted here by mistake
My daughter has egg and cows milk allergies that we're hoping she'll grow out of, though. I progress so far. Not anaphylactic but still a nasty reaction when it happens.
I found the weaning stage so hard, because we were so limited in what we could give her - a picky eater plus allergies made everything so difficult and my stress probably made her resist food even harder. It is getting easier to find dairy free alternatives in the supermarket, even in the last 2 years I've noticed a change. Tesco are ahead of the rest in my experience.
Eating out and travel are the risky bits. I basically take a packed lunch for her everywhere - there's no walking out the door and assuming she can have something at a cafe when we're out. All our mistakes have been on holiday because you're out of your routines - she once got the wrong milk on her cereal because the unfamiliar labels meant we got it the wrong way round - another time she came up in hives and it turned out hummus in France contains fromage frais... and so on.
I'm dreading the age where she wants to swap and share food with other children. We'll do our best to teach her not to, but when you're otherwise encouraging sharing behaviour it's a hard one for her to understand.
My boy is allergic to dairy, eggs, gluten and peanuts. It's really difficult, especially as I'm breastfeeding him and have to restrict my diet too.
It's not life threatening though, he gets eczema and just touching milk produces hives. He failed both his milk and peanut challenges hasn't had an egg challenge yet. I know the consultant wants us to reintroduce gluten because my mum is coeliac and he needs it in his system to check for that. I said that I want him to be a lot older before we do that - he's not even talking yet. I want him to be able to tell me if it makes him feel bad.
I do find it really stressful when we're out but most places (especially chains) are pretty good. The best experience eating out by far is Jamies Italian - not a chicken nugget in sight and they didn't even have to alter the salmon dish for him.
Friend's houses is hard because you do have to question everything and its so easy to come across as overprotective or like you're attention seeking.
Totally understand, my daughter have peanut, nut, fish and egg allergies. I have managed things well so far, but my eldest started school last year and I've found losing that element of control very hard to cope with. People don't often take the allergies seriously and yes they do say about it not happening in their day. At Christmas my husbands family put peanuts out. I insisted they put it away and my daughter still had a reaction which required treatment.
12 yr old DS here with severe egg allergy (has epipens), also strong reaction to milk. Presumed allergic to peanuts (has never had one, but rast and skinprick tests indicate). Doesn't tolerate legumes well. Has grown out of nightshades, wheat and beef intolerances.
I remember well turning up to friend's birthday parties clutching a bag of food and crumbly everything-free cakes, and having to buy vv small rice-flour loaves for more than €5.50. And cutting everything out of my diet before weaning. Also scratching his body to bits with horrendous eczema or puking all night if he'd had a tiny bit of milk.
Luckily he seems to be less impacted by some of these things and has also been very sensible about what he eats/asking about ingredients if not sure. We're also very lucky in our friends who have him over to play, and the after school clubs he's been to.
My worry is that now the teenage years approach, he'll be less careful or some idiot will think it's amusing to conceal a peanut in something. We've become lax about his epipens and need to re-establish ground rules for when he's out and about on his own.
Sorry for the kids who are similarly affected, and their families. The only upside is that because severe allergies are more prevalent, there is more awareness (though still a lot of ignorance too!)
P.S. my DD has no allergies at all and is thoroughly robust.
We have 5 DD's. DD 4 (nearly 5) is gluten intolerant. We are lucky that she doesn't have a life threatening reaction to anything but it does make her feel really ill.
She has quite an obsessive personality so even from about 3 she has been paranoid about eating anything with gluten in. She will always check with me and her dad if people give her things. She won't even touch her sisters if they have been eating 'normal' food - she says they have gluten fingers!
I get so wound up by people that don't take allergies and intolerances seriously - my pet hate are the ones that say they can't have something but then if it is something that they fancy they will 'have just a little bit'
GP's with little understanding is definitely an issue. When DD was a few weeks old I was told it was impossible for her to have an allergy as she was predominantly breastfed. How can a GP be so daft.
Does anyone know of a good allergy consultant in London? My son has horrific eczema (allergies run in my family) and nothing is clearing it up and the GP isn't sure what to do! Thanks