..to tell food allergies they can Fuck Off?

[Lisa78Lemon]

Apologies in advance but I just NEED to rant.

I am well aware that there are far worse conditions that could be affecting my darling 10mo DS and, in the grand scheme of things, food allergies aren't all that awful. However, I am just finding it so hard to cope and can't stop constantly getting upset about it.

My son is severely allergic to dairy and egg (likely anaphylactic) and allergic (hives) to peas and lentils. We know this from reactions at home. Tests also show he would probably react to most nuts and sesame so we have been told to avoid them. He reacts to dairy by contact and egg cooking in the air.
Suddenly, it seems that the world is trying to kill my son. I know that sounds dramatic but he ended up in A&E when my DH ate crisps containing dairy near him and he gets hives when someone kisses him. Trips to cafes and restaurants are an absolute nightmare and I almost had a panic attack when we had to bring him on a plane recently. I wet wipe repeatedly and always have his Epi-pens in my sight. How the hell am I meant to manage him eating out, Birthday parties, play dates and school?
I also feel like this whole thing is sucking much of the joy out of being a FTM. Im forever watching him like a hawk; wondering why he's coughing again, what made him vomit and where that new rash or hive came from. Weaning has been an absolute nightmare and I get visibly shaky and have palpitations when we try him on a new food.
He's constantly itchy and has never slept more than 4 hours in a row, even though his eczema is quite well managed now (thanks to a fuckload of topical steroids). Every day, multiple times, I struggle as he cries and I slather him with moisturiser; he must think I'm so awful forcing him to put this greasy cream on all the bloody time.
I also feel I shoulder all of the responsibility. DH is good but he doesn't seem to 'get it' like I do and is constantly 'forgetting' to read ingredient labels at the supermarket or to wash his hands and face after eating something containing DS's allergens. I feel like I'm constantly watching him too. And don't get me started on other family members who are just dire at times.
It doesn't help that I'm naturally introverted and non-confrontational so I find it really difficult to ask people directly to e.g. not touch DS or allow their kids to touch him. I guess I'm just going to have to grow some balls as I can't risk another reaction but it's just not in my nature to 'police' people and give them instructions.
Being a mum is hard enough, why do allergies have to exist as well?
I wish I knew why this has happened, what I did wrong and how I can 'fix' him. Sadly, his blood levels are so high that any research I do suggests he won't be growing out of his allergies (at least not any time soon), and my heart just breaks for him

DH is good but he doesn't seem to 'get it' like I do and is constantly 'forgetting' to read ingredient labels at the supermarket or to wash his hands and face after eating something containing DS's allergens.

You have a DH problem. You need to have a really serious talk about this. When allergies are as serious as your son's, the whole household needs to work together.

It doesn't help that I'm naturally introverted and non-confrontational so I find it really difficult to ask people directly to e.g. not touch DS or allow their kids to touch him. I guess I'm just going to have to grow some balls as I can't risk another reaction but it's just not in my nature to 'police' people and give them instructions.

Sorry but you really do have to stick up for yourself more. I know that can be difficult if you're not used to it, but this is your child's health we're talking about here. There are too many people who don't take allergies seriously, and they need to be told.

I wish I knew why this has happened, what I did wrong and how I can 'fix' him.

You have done nothing wrong. You can't stop the problem but you can control what you do about it, which basically means being more insistent regarding other people's behaviour around him.

I don't really have any advice. It is tough and I totally understand how sad you must be feeling.

Do talk to other parents in the same situation. We understand what you're going through, have tried out all sorts of solutions, and can help you navigate some of this.

My very allergic DD is now 17 and it doesn't rule her life any more, but it is always there as something to (automatically) consider.

I know you're absolutely right about sticking up for DS @tectonicplates and I'm hoping that it will start to come more naturally as I'm asking for him rather than me :/
Thanks for the words of support @HoldMyLobster, in a funny way it does help to know that others are navigating the same path.

My dh is allergic to nits and that’s bad enough. You have my sympathy op

Nuts!!!!! Although possibly I’m ‘allergic’ to nits (starts scratchings)

@lollypop701 that made me chuckle! Allergy to nits would be pretty awful though; you'd have to steer clear of all primary schools!

You have my sympathy OP, I went through very similar with my ds, even to the extent of having to leave cafes before he'd even touched anything because hives broke out. He's now 17 and is still allergic to nuts but he grew out of other allergies and the hideous eczema, hay fever and hives subsided over time. He carries epipens and manages his allergies well so far.

At nursery and school he was well looked after, even his friends helping to look out for him as they all grew older .

It DOES get better, partly because you adapt and partly because your child will grow and become stronger and more robust. What affects him a lot now may not do so as much as he gets older. It's hard to imagine now but have faith, life will get easier.

In the meantime, be kind to yourself. It is a harder path through parenthood but you will manage and get accustomed to managing it over time. I found the Anaphylaxis Campaign helpful and even attended one of their workshops. I also invested in eczema friendly clothing for those early years (Cotton Comfort I think). And later on tried some other, less gloopy creams and lotions but still used topical steroids on bad flare-ups. Such a horrible condition.

for you OP, I remember it well and shudder a bit at what we went through but it's slowly receding from memory. I hope it does for you too.

@Thamesis Thank you for writing this; it has brought a tear to my eye hearing about his friends looking out for him. I'm so glad things have improved for your son. A few people have mentioned the Anaphylaxis Campaign so I'm going to go over and have a good browse through their website now.

Sorry to read this. I don't really have any advice beyond saying that it does get easier with time and you will cope. It seems overwhelming at first but it does just become part of life. There's also a pretty good chance that things will improve in time, even if not immediately. You could have been describing both my boys as babies. Though the elder one only had a few allergies, the younger one had a lot, and very similar ones to yours.My elder boy has outgrown his food allergies completely though he still has a couple of environmental ones and his skin is completely clear - he has reached the age of 17 without a single teenage spot so far in fact, which is nice as I think he did all his suffering as a baby. People would peer in the pram to coo over him as they do, and then physically recoil when they saw him. It was an awful time and our lives were dominated by it all, but with time we got used to it and then it got better. Then I had ny next son and it was like history was repeating itself with bells on. I wont go into details as it would take all night, but suffice it to say, I understand how you are feeling right now. DS2 has a mixture of IgE and non IgE mediated allergies and that makes it hard for people to understand so I have had a lot of battles to fight. My DH still doesn't really get it and gets confused over which allergies are immediately life threatening and which aren't. DS2 can tolerate small amounts of his non IgE mediated allergens, such as "hidden" egg, but for years I just said no to everything as I seemed to be the only person on the planet who understood what was going on. Actually that's not true. My DD who is 7 years older than DS2 was fabulous. For a while when he was quite young I had a job when I had to work nights and weekends periodically and at age 12/13 she could cook safe meals for him and make sure he took all his (then, quite complicated) medication. Unlike my MIL who tried to feed him toffee and nut pavlova one day because she, for some reason, thought that the nuts "weren't real". No explanation on the dairy and egg content though!
I totally get the feeling that everything's piled onto you, and I added guilt that I was burdening my DD to that as well. Its tough and does feel very lonely, but you are not alone. Lots of us understand.
DS2 hasn't grown out of any of his allergies except, to his dismay, lentils. But he is a super fit, sporty, happy teenager now and manages everything himself more or less. Its just "normal" to him. A few years ago he told his immunologist he didn't want to come any more. He didn't want repeatedly testing any more, he was happy with his diet and just wanted to get on with life. He does everything that all his friends do, goes to parties, eats out etc and whilst I can't say that I never worry, I do trust him to cope. He went abroad on a school trip last year and I was anxious about that as it was the first time in another country without me. But it was fine and he had a great time. They even had a French cookery evening and the chef had arranged modified recipes for DS to try so he wasn't left out.
When my boys were at the stage yours is now I couldn't even imagine going out for a family meal, never mind that they would one day be out doing their own thing without me double and triple checking things, so I do understand. I have been you. But one day you will probably be me. Its still always there, in the back of my mind of course, but allergies don't dominate my life any more, or my boys' lives.
I'm also an introvert so understand that side of things, but my inner mama bear does make an appearance when needed!
Take things one day at a time and try to stay positive. Happy to answer any questions or just chat if I can help at all.

OP, food allergies for your family are awful because your DS has an allergy that could be life threatening. I’m sure you will grow more confident in convincing everyone how important it is to keep him safe, starting with your dh and family.

It’s not easy. I have 2 allergic dc, the youngest is growing out of her allergy but not the oldest who’s nearly a teenager, and it’s hard. Allergy and eczema often go hand in hand and both had terrible skin when they were babies, really sore and/or dry, and scratched all night their skin bled. Weaning was a nightmare.

However very gradually, it did get better, and very slowly, it does get easier - and you get used to reading labels, bringing your own food wherever you go, carrying a pharmacy with you, mentioning it at every class/play date/party invite etc.

I know how tired you must be feeling, and having to worry all the time. Keep doing what you’re doing, and tell dh to wash his hands!

I did join the Anaphylaxis Society for a couple of years in the early days, and this really helped me. www.anaphylaxis.org.uk/

Forgot to add that the clothing I mentioned is specifically designed for eczema sufferers. It has mitten ended tops and babygros etc that go beyond the baby years to stop little ones from scratching at night or on car journeys.

There might be other manufacturers now, it's been a while, but they were fantastic and saved my sanity a bit.

Eczemaclothing.com - don't know how to do links but this is their website.

Honestly I’d have a dairy free house, the potential for cross contamination is too much. You may well have to pack him his own food to take to parties, etc.

Dd has coeliac disease and multiple allergies though thankfully only gastrointestinal symptoms not anaphylaxis. There are very few people I’d trust to cook for her. When we visit my MIL we take our own food. She was older when she was diagnosed but if she’d been going on play dates, etc I would have had to have a serious discussion about cross contamination, not using butter which has toast crumbs in, etc.

Eating out will always be a risk. Chain places seem to have better policies in place. Dd will eat in places like Zizzi, pizza express, waggamama.

Thank you all for taking the time to answer. I do feel better after a sleep (I'm not going to say a good night's sleep as DS had me up about 10 times!) and reading your comments. Some days I feel like we're managing well and DS is the happiest boy so it's not all doom and gloom, I promise! I've joined the Anaphylaxis campaign and got their little book about a squirrel who can't eat nuts for when DS is older. Will also look into those eczema clothes; we have scratch sleeves and they are working quite well at the moment.

Another mother of a child that collects allergies the way some kids collect stickers. You get used to it when DD was a baby it felt a lot more overwhelming but 5 years on we mange much better.
Weaning felt like playing Russian roulette but as they get older meal times become easier now we have a list of family meals we can all eat.
When DD was small I joined a few FB groups with other families dealing with the same thing they were a great support during those early years.

Thanks @Watermama ! I too have been glued to Facebook allergy groups, although the different way they deal with things in the States is a bit disconcerting as they seem more proactive than the NHS. It is interesting to see how others manage and always good to get more 'safe' recipes.

My aunt's kids both had severe nut allergies, where just the smell of the things in the same room would bring on terrifying reactions, I don't have any advice but just a handhold for you.

It won’t feel like much now but much of this will pass. My now 11 year old DS has outgrown his egg and milk allergies, and is only allergic to some nuts which is much easier to manage. Would recommend as precious poster has said keeping your house free of these foods if he is that allergic and would avoid eating out for now - not too much of an issue at the mo! I’ve always sent food for birthday parties etc.

I have similar nut and legume allergies, the latter of which only came on when I was about ten though. I can promise that you learn to build your life around it - and yes, your DH needs to get his arse into gear and stop "forgetting" to keep your son safe.

My son has eczema so bad - that he bleeds when he scratches. Constantly on steroids. Also allergic to nuts, eggs, chicken, and fur. I feel your pain. We’re going to rest him for more allergies soon - I’m pretty sure he’s allergic to some fruit and tomatoes.

My husband is allergic to dairy and we have to have a dairy free house. Fucking nightmare!

Dairy free kid here not touch. It's scary horrid and a headache. But she is 14 a very strong self advocate and we ve managed lots of holidays abroad etc. It does feel easier with time. Early days I often cried looking at packets wondering how I'd ever feed my child Hugs to you though yours is much more complex.

My daughter is 11 now and as a baby was allergic to dairy, eggs, peas, beans, lentils.... it was awful. She did not stop crying for the first year and it was just awful. She was breastfed until 18 months and I think what I ate affected her tummy. We switched to neocate at 18 months and she was a different baby. She also had suspected coeliac disease.

Over time she grew out of the peas, beans lentils. Sadly she Still has an anaphylactic allergy to milk and eggs and it’s tough but she takes it in her stride. She has used her epipen twice when Tesco changed the ingredients of things she had eaten for years without any marks in the packaging so it’s so important to still read packaging of things you’ve bought before. She also has confirmed coeliac disease.

Life is much easier now than it was even a few years ago as the number of products is much higher. She’s happy and healthy and just part of life. If I think about it too much I get scared and upset but it’s just life now. Unfortunately she will never outgrow it now, and I hope you have better news over the years to come.

Birthday parties, play dates, aeroplanes you take your own food and you stay. I still do that now.

OP, one thing to bear in mind when you compare US and UK medical care is the different way the systems are funded. Being proactive might be a good thing in some circumstances but could equally be an income generation tactic in others. More intervention doesn't necessarily translate into better outcomes.
When my DS was 4 he was diagnosed with what was then very newly recognised condition, particularly in the UK and at the time there were no UK support groups that I could find, so I joined an American one. Their children were all having way more investigations and treatment than DS and it did worry me, especially as the attitude from a lot of the American mothers was that publicly funded healthcare was at best inferior and at worst dangerous. But in fact my child improved at a similar speed to theirs and a lot of the "cutting edge" (and expensive) treatments that were already becoming routine over there have subsequently been shown to be ineffective and some potentially harmful. So the more cautious approach of the doctors here actually paid off. Obviously I am not saying that is always the case, but just take some of it with a pinch of salt, and if being in a particular group isn't helping you, then walk away.

@Lisa78Lemon

Thanks *@Watermama* ! I too have been glued to Facebook allergy groups, although the different way they deal with things in the States is a bit disconcerting as they seem more proactive than the NHS. It is interesting to see how others manage and always good to get more 'safe' recipes.

We started in the UK but moved to the US when DD was 4, so we've been through both systems. If I can answer any questions I'd be happy to.

I'd say the main difference for us was that in the UK DD's allergies were diagnosed and treated by a hospital pediatrician, whereas in the US she is diagnosed and treated by a specialist in allergies and asthma.

She's had skin and blood testing every three years here.

She was originally prescribed an Epipen in the UK only after she was diagnosed with a brazil nut allergy, which came more than a year after being diagnosed with a peanut allergy, which was a bit worrying as we have since had to use the Epipen on her after eating peanuts.

I have found the doctors in both countries to be very knowledgable and helpful - it's worth asking them all the questions you can.