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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

I've got an hour before I get to my mums. Please peel me off the ceiling before I get there.

414 replies

TippyTinkleTrousers · 22/08/2017 19:50

We have two boys 10 and 6.

The six year old has multiple severe allergies and an immunodeficiency and been out of hospital a lot of his life.

He's anaphylactic to dairy, egg, banana, nuts, shell fish with a moderate allergy to wheat, soya, pollen, animal dander and more.

He sees a specialist in London Eva Lina and they test him annually. The allergies are getting worse but we are aware and in control of them.

He's never stayed away from us ever.
When we go somewhere I provide all food for him to make life easier for everyone. Mainly him!

Last night he stayed at my mums because I'm on a placement. I provided all food, said he just eats that.

She called me and asked if he could have lemonade. I say yes as long as the ingredients are just water sugar etc and no allergens.

She called me later and said "Can he have Rowntrees Ice Cream?"

I said "you don't mean ice cream do you? You most mean ice lollies, just the fruit juice."

She said "yes ice lollies."

2 hours later she calls me to tell me it was 63% skimmed milk powder in it and he's fine.

Doctors have specifically told us to totally avoid milk because we tried a baked milk challenge gave him baked milk and he had crippling stomach ache and dihorreha the next day for hours it was horrible.

We are now flooring it down the motorway telling her to give him antihistamines, it will take an hour to get there.

I was angry very very angry (though didn't shout at her I had to be calm and tell her what to do in case he started reacting) but now I'm sick with worry.

I mean this is fucking life or death. I'm astounding, shocked and relieved that afte 2 hours he has no symptoms but all is not over.

I will have to take tomorrow off because with experience he will be in screaming agony like last time.

For fuck sake.

This is his first every night away from me. I really trusted my mum. I really thought she knew that ice CREAM was a sign and she knew to read labels.

OP posts:
Nanny0gg · 23/08/2017 19:14

I'm afraid it's typical of grandparents in my experience, they don't listen as they think they know best

How many grandparents are you referring to? The OP has only mentioned one.

That must mean we're all daft, unthinking and a danger to our grandchildren.

Glad it wasn't too horrific for your DS OP.

perper · 23/08/2017 19:16

Agreed Nanny0gg. I find it really quite unpleasant to read some people's comments about grandparents. Not all grandparents are stupid, ignorant, uncaring or controlling. Most are the absolute opposite.

Fleshmechanic · 23/08/2017 19:17

I don't understand why half this thread is people acting like you're crazy? Like excuse you for having a child with serious allergies? And that would piss me off, too, what your mum said. Like did she not think she was capable of giving them things that wouldn't kill them but felt bad saying no? Did she think that would be helpful? I'm sorry but why did she even have to give him any kind of treat. I know it's all about being normal etc but if there any doubt she should have said no, you can't have this because I'm just not sure and it's not worth the risk. You're doing well being understanding because I know I'd lose it lol, it seems like a simple thing to grasp and I'm sure you have a very solid list of what they can eat safely. Maybe if you ever possibly had to do it again you could write a list and make sure 100% they don't deviate from it. Or maybe just make/bring all food and snacks and drinks for them and tell them to have nothing else.

Decaffstilltastesweird · 23/08/2017 19:18

I agree with some of that perper, but the whole "oh don't BAN her from seeing him" has already been answered very reasonably by the op; the children have never stayed away from home before this, because of the severity of her youngest' sister allergies. She isn't prepared to run the risk of another incident by letting him stay over again. The op loves her mum and wants her children to see her exactly as much as they did before, with no overnight stays *exactly as they did before.

Decaffstilltastesweird · 23/08/2017 19:19

Oh Ffs autocorrect. Let's try that again:

"I agree with some of that perper, but the whole "oh don't BAN her from seeing him" has already been answered very reasonably by the op; the children have never stayed away from home before this, because of the severity of her youngest's allergies. She isn't prepared to run the risk of another incident by letting him stay over again. The op loves her mum and wants her children to see her exactly as much as they did before, with no overnight stays exactly as they did before.

perper · 23/08/2017 19:23

Decaffstilltastesweird My problem is more with the multitude of posts that seem to be trying to rile OP up against her mother, when OP actually seems to be a hell of a lot more reasonable than them. It just feels like shit-stirring by people who love family drama.

I personally would allow the GPs to look after the kids again in future (although that's completely up to OP and depends on their family situation anyway) but just to be clear I haven't suggested the GPs are being banned from contact as the OP has made it clear that's not the case, just that she won't allow them to look after them again.

seven201 · 23/08/2017 19:27

My 14 month dd has cmpa, not as bad as your dc though. I would be furious if dd's grandparents had given her anything with milk in. I think you're doing well to have not gone mad at your mum. So glad your boy is ok.

wheretoyougonow · 23/08/2017 19:43

I'm glad your boy is ok. Obviously the whole situation is bad for him but I just wanted to give you FlowersFlowersFlowersWineWineWinebecause it must be incredibly hard for you and your husband too. It sucks this was your first 'night off' in 10 years and this happened. Hold on in there.

fullofhope03 · 23/08/2017 19:56

Dear OP - Flowers and a very big HUG to you xxxxx

Weedsnseeds1 · 23/08/2017 19:58

Skimmed milk powder in ice cream will have been heat treated three times. Pasteurised at 72 C then separated into skin and cream. The skim is then spray dried at around 180C. To make the ice cream it will have been reconstituted, other ingredients added, then pasteurised again ( probably for a longer time than a basic raw milk pasteurisation). So at that point the protein has been well and truly nuked.
Perhaps that's why there was little reaction?

Lovingit81 · 23/08/2017 20:00

Poor you OP I hope all is ok. Flowers I would feel exactly the same. My son has multiple allergies but nowhere near as bad as your poor DS and I have battled with my inlaws to understand the seriousness of it. I once had to give my mother in law hell for forgetting to take his epi pen. All I can say is you need to keep educating them and go with your instincts. Mistakes happen but this could be life and death and they need to realise that. Best of luck x

TippyTinkleTrousers · 23/08/2017 20:06

weedsnseeds I had no idea about that. How did you know? That's really ineresting but not sure how I should take it. I.e is it further down the 'ladder' to baked in milk (I.e small amount of butter cooked baked into a cookie) because that also takes on a few processes to get to where it is...?

Thanks for your post because I didn't know that.

OP posts:
Cupoteap · 23/08/2017 20:10

I'm really pleased he's ok x

Notanotherpawpatrol · 23/08/2017 20:15

Op I'm delurking to give you big hugs. I'm so glad your ds is OK. I'm sorry some posters just don't seem to got it, you only have to read the nuts on a plane ban thread to realise that some people really don't get allergies at all :(

Warmworm · 23/08/2017 20:15

Oh my, I hope your ds is feeling better now. I sympathise with your feeling of panic. How horrible for you. It seems like this was crossed wires over what exactly each of you thought the lolly was.

I also sympathise with those relatives who don't get it and think you're making it up. My FIL keeps telling me that no one had allergies in his day and they were "invented" by the Americans! I just grit my teeth and resolve never to leave her with him. MIL thankfully is very cautious and understanding.

MissJSays · 23/08/2017 20:21

Glad he's ok, OPFlowers

Laiste · 23/08/2017 20:24

Gotcha lenl Wink

Rainer · 23/08/2017 20:32

I'm an anaphlactic. Gotta say, if I were you're mum I'd be feeling the same. She's expressing that she's gutted and doesn't feel deserving of having them and you need to calm down now ds is fine and reassure your mum who was probably utterly terrified of both what might happen to your gs and your reaction.

user1495656648 · 23/08/2017 20:52

I hope your son os okay?! Im in the same situation and really feel for you! my son also has multiple severe anaphylactic allergies and a number of mild allergies. I say mild because compared to the others they wont kill him, but still serious enough to cause sickness and diorea and a shit load of pain for days, sometimes weeks 😓

I cant trust my mum to look after him for more than a couple of hours. Basically just in between meal times because she doesnt seem to take it seriously. Never pays attention when i explain what to do in an emergency either which doesnt help. other relatives dont want to look after him because they are scared and dont want the responsability.

its not what you want to hear but ive had to give up work now my son is starting school. I used to work 60 miles away from home , apart from not being able to concentrate due to constant worry, with no family who could care for him after school or who i could rely on when school call in an emergency i felt i had no other choice.

Its hard and very isolating for us allergy families. Made harder when we cant rely on the people we expect to be able to trust.

Maybe your mum would be interested in going on a course to learn about symptoms and epipen training etc?

Weedsnseeds1 · 23/08/2017 21:21

I'm a food technologist tippy, butter normally has one or two pasteurisation processes, on the raw milk, then the cream. Sometimes just the cream if it's been separated raw. Then your bake time / temperature for the biscuit. But butter would only have traces of protein, it's 80- 82% fat, with the water phase containing a bit of lactose / protein etc.
Ghee is basically pure fat as it's clarified butter.
SMP would be a high percentage protein, but by the time it's made into ice cream, very denatured because of all the heat treatments.
Not sure why the significance of "baked" as opposed to any other heat treatment, time / temperature would be the significant factor I would have thought rather than the type of heat treatment?
Not familiar with the baked milk challenge, I spend more time looking at how to prevent allergen cross contamination in processing, I'm not a dietician or anaphylaxis specialists. But seems logical to me that it's the denaturing of the protein that's behind the challenge.

.

user1489675144 · 23/08/2017 21:24

WOW

I hope your son is ok now.

Perhaps let him stay again with the instruction that he eats NOTHING other than what you leave for him. That way you get a break/placement etc and she doesn't feel like she has failed forever.
Good luck.

bigims · 23/08/2017 21:27

Really sorry to hear about this. My daughter is a type 1 diabetic and anything she eats needs to be "neutralised" by insulin. It is shocking how few people get this even when explained to carefully.

I have no good answer to this except there will be people you can trust who get it and people who don't. Probably the most important thing is that school does and I hope that is OK. I send you huge positive vibes as this is not easy.

perper · 23/08/2017 21:28

Perhaps let him stay again with the instruction that he eats NOTHING other than what you leave for him. That way you get a break/placement etc and she doesn't feel like she has failed forever

I think this is a very good suggestion- she can be trusted to do that, as she checked each for permission from you this time round to feed him something else. That way you'll know he's safe, he'll get a normal life, and she won't feel like you don't trust her at all. Smile

Weedsnseeds1 · 23/08/2017 21:43

Just had a quick look at a study paper on the baked milk challenge
Yes, it is based on the higher heat treatment in an oven denaturing the heat stable proteins in milk ( casein and alpha- lactoglobulin). Pasteurisation is a relatively gentle heat treatment at 72C as it's designed to knock out pathogens, not make the product taste "cooked", but spray drying should have a similar effect to baking, as much higher temperatures, plus you have an extra heat treatment for the ice cream.
Disclaimer - ask your specialist what they think, my area is processing, not allergies, but seems a reasonable hypothesis!

Justaboy · 23/08/2017 21:46

TippyTinkleTrousers Bloody hell you've got your work cut out there. I hope that your mum can and will learn from this incident. I've got an allergy seems to be some sot of dander tree pollen come out in Hives Urticaria they call it first started some years ago and i thought i was going to expire with the way the heart beat was going.

These days keep packets of Piriton all around the place half a packet stops it pretty sharply! Was give an Epipen in case of need;!!