Anyone else's families think they exggerate their dc's allergies. How do you deal with it?

[Whelk]

Some of the granparents of my dds seem to be in some sort of denial about my dds allergies (dd1 to egg, dd2 to milk and egg). We have an epipen for dd2's allergies.

They give me the strong impression that they think we are exaggerating it all. They have never seen a reaction.

Perhaps it is their way of dealing with it?

It's important to me that the dds have a relationship with their granparents. They are generally good grandparents and i believe that the dds benefit enormously from positive relationships with extended family.

How do I get the grandparents to take it really seriously so that we might feel comfortable leaving them (without a packed lunch for dd2- or is this just too ambitious)

Argh, whilst my DCs don't have allergies, my dad and stepmum are in complete denial about DS1 being on the autistic spectrum. Stepmum constantly harps on about how the fact that DS1 has seen a psychologist is going to be a black mark on his record forever (What the hell? Being assessed by an ed psych is not akin to having a criminal record )

I'd go with the packed lunch thing for your DD for now. If they are otherwise fantastic grandparents maybe it's just their way of dealing with it. I don't really have any advice though...

I have had both the above problems. the bottom was only cured when they ignored ds' diet and were left with the results as he was staying over. thankfully he didnt go into shock but he did break furniture, and be a horrid nasty violent child. Shock reaction they have never pushed but didnt understand that it was cruel to feed on grandchild milk products eg ice cream whilst not giving my dc a treat. Dc turned around and said ^dont you love me gp? why does x get treats and i get nothing? Why does mummt have to keep telling you not to give me y and z because it might kill me?" he was very little at the time and it made a bit of difference.

TBF once they had adapted to the severe allergy part they were good its the diet restrictions for behavioural reasons they keep challanging. Education and knowledge re allergies has been the biggest problem.

Can the most problem grandparent come with you to the next hospital appointment and here from the docs how serious it is? maybe get trained in how to use the epipen? Means they have to face the seriousness of the consequence by taking responsibility for it.

start with the packed lunch for a bit then grandparents might begin to understand your concern. my friend always had a pack lunch instead if schools dinners (which are compulsory at my school) until the school understood her needs, and catered for her.

hope this helps!

Safer to leave the packed lunch.

I've been through Ds's problems so many times with Mil (and Sil) but he has had reactions at both houses. He was given crisps and huge fuss made "they are xxxx brand, your favourite"..Ds took one bite and nibbled tentatively. They were the right brand (safe at time for him to eat Salt and Vinegar), but Cheese and Onion and other flavours all mixed in together (egg and dairy allergy). I comfort Ds, while Dh goes into kitchen trying to keep things normal (as long journey to visit). I have Ds sobbing and asking when will reaction stop as I grab for bag of emergency medication while Dh hisses at me not to make a fuss and spoil the lunch!!!!!

Oh dear, I'm feeling very angry again remembering the whole scene.
(Mil has University degree and Masters so should be able to understand allergy)

Send a packed lunch and keep Dcs safe and be able to relax....

Oh and last time we visited the pre lunch nibbles were salted peanuts, which we all politely declined.

Thanks for your replies. I am more than happy to supply packed lunch but I guess I am always concerned they will give dd2 additional foods (which they have done). Dd1 is great at piping up about what she can and can't have but dd2 is too small.

They are just so dismissive when I am saying what she can and can't have and say that the epipen is easy, no need to have the formal training. Aaargh!

I hate that it causes issues with dh. Am shocked by dukandoit's story!

My DS has mild allergies to ketchup and pollen is thought to be a big cause. In the summer he went to stay with MUM, Dad Sis and Bro for a few days in a caravan. When there we went out for lunch (before I went home again) and I went back for his antihistamines. Got the whole why take them he's fine etc. 2 days into the holiday he got hives and was 2 hours before they got back to caravan and gave him medicine- apparently he was awful during this time (hyper etc - well yeah!!!!) 4 days later we were at the GP's as wouldn't go and got given 1 months worth of stronger antihistamines to be taken daily. I wasn't harsh with Mum and Dad but did reiterate without knowing the allergen precaution is the best way forward and treating immediatly.

I'm sorry that you are having these problems especially when the allergiea are far more serious than DS'.

Best of luck.

The trouble is that lots of people don't fully understand the difference between sensitivity and true allergy. True allery is swelling of tongue and lips/ hives/severe rash all over (systemic). Lots of people take a mild chin rash after something as an allergy when it isn't. My dds have both had chin rashes after ketchup/ mayonnaise and such like and neither get it now as they don't miss their mouths so much Also lots of children get tingling of the ongue with some fruit - this is not an allergy. I went to an allergy study evening which went into some detail about the differences between intolerences and allergy of milks and food.

but surely then when someone is told a child has an allergy then they should believe you and avoid the allergen. Even if they think its a sensitivity or whatever when we say our children are allergic its because tests have shown an allergy.

I couldn't give a shit who believes me but if they endanger my child life then they will.

mumbar, the problem is that not all people who say children are allergic have actually had tests, they see a rash after food and presume it is an allergy. Often in babies who dribble lots rashes appear on the chin after being fed/ weaning food but its due to saliva and chapping in many instances but parents then think its an allergy, cue it happens after loads of foods coincidentally and hey presto child has a limited diet because they are 'allergic' to everything

I appreciate that, BUT the OP's DC's have allergies, proven and epipen yet GP's still give the allergen. That is not on tbh.

I apologise as you posted about ketchup and I took offense as DS reaction is to this (certain brands) so paed cons thinks possibly something in the ketchup. Mainly tho its airbourne - like yesterday when his eyes go really black and puffy, nose streams and hives appear. He has only had signs of swollen throat twice and puriton have counteracted this.

Mumbar, if he has been tested then no GPs should definately avoid allegens. Ketchup causes a rash in loads of children on skin contact, it is a skin irritation and generally they desensitize over time.

With the reactions dd1 had to egg and dd2 had to a tiny amount of formula milk plus the skin prick tests, there is no doubt they have got proper, full blown, full guns blazing allergies.
GPs know this!!

I have to be honest my parents avoid ketchup with him - as the RAST test showed reaction. Its the pollen we are unsure of. We know he has hayfever as symptoms are there but he has come to me clutching this throat and swollen face once when in the park and they cut the grass. It was then he had swollen throat and hives too.

I think thats excellent advice BB.

I am lucky we do not epipens but I would be exactly the same as the posters above and would rather be over safe than sorry.

Hope it all works out OK OP.

The Anaphylaxis Campaign call this the "Grandparent Syndrome" I think, so, yes, very common.

Still have fond memories of exMIL saying 'Oh can't she have just a little bowl of ice cream?' when we visited with dairy-allergic DD1, and then slipping her a bowl behind my back. Followed by hives ('Oh, she must have scratched herself' all over her face and chin and neck and chest and trunk... ) and wheezing, then epic diarrhea ('Where are Math and DD1 -- they're late for dinner?')

The solution was to guard DD1 like a hawk when we visited once a year.

ExMIL didn't believe anything in the health department unless she experienced it herself.

I recommend what Babybarrister suggests, and also get your DH on board completely if he's not now, so the two of you present a united front. exH never grew a backbone where his mother was concerned.

I second babybarrister's advice. My inlaws did a lot of eyerolling and sneering about dd1's life threatening allergies until we took them to the allergy clinic. I tipped off the consultant that they were deniers and she went through it all very clearly, referring to test results etc.

The irony was the following day they took dd to the pantomime, she got a bit itchy and hot in a new dress and they gave her a massive dose of piriton and phoned in a panic (even though she hadn't eaten/drunk anything at all)! I really think they suspected we had imagined it/made it up before then.

Good luck - it is infuriating (and terrifying) I know. I personally would always leave a packed lunch in your situation. Even if they do come on board, the learning curve is steep and labels can be hard to read if you are a bit older/more doddery. Apologies to all sprightly gps out there!

I think that we come to expect strangers not to take us seriously but can't help expecting better of our families. It's really hard when family are unsupportive - and also a bit scary because family sometimes think they have a right to intefere in the way we bring up our children. Mathanxiety how dreadful that GPs would feed your DD food behind your back!!

Whelk I wish I had some lovely, positive advice, but actually my way of dealing with this issue has been simply to have food for DS with me at all times and never leave him alone with anybody!

The situation with my family has been very difficult and I've stopped trying to get them to believe me. They used to say things like "You're just being dramatic" and "He can't possibly be allergic to all those things". I avoided a couple of large buffet-style family meals because I couldn't face the prospect of DS crawling through spilled ice-cream and that me feel sad and isolated. On the other hand, my in-laws are lovely, lovely people and they try really hard but even they will probably never really get it. They still ask basic questions about what DS can and can't have.

Captaincroc I'm sure you are right about some parents presuming allergy, and no doubt we all get a little paraniod, but I found it upsetting when my family assumed that I was doing that - also quite insulting that they thought I could mistake hives, distress and wheezing for just a slight contact rash around the mouth!

Whelk, I hope you find a solution!!!

Thanks all. Its so helpful just hearing that others are in the same boat although obviously I'd rather for your sakes that you weren't!

Some brilliant suggestions babybarrister. I have sort of attempted a little of that. In fact I am determined that they attend the training on the epipen run for the nursery or are trained by a nurse and not just by me. I will try the videos of anaphylactic shock (although I struggle with watching them myself)

It's infuriating really though isn't it (just having a whine now) but I cannot ever imagine belittling anyone's medical conditions, least of all someone who I love. Baffling!

It happens all the time sadly and on this thread too. I mentioned DS ketchup allergy and airbourne (poss pollen). Straightaway there was a post about skin rashes and contact allergy . Do people really believe that a parent would deny a child something for a 'rash'.

I got the same attitude from DS school until the day he came home upset and hives on his face by the time we got home. He said the school had refused to give him antihistamine when he asked and so I sent a photo to the school of his 'rash' and swollen face.

It's a sad world when we have to prove these things.

Just adding my sympathies. I can't bring up the subject of DS's allergies with my MIL because she just makes bitchy comments and implies I'm making it up, starts talking like she's the world's leading authority on allergies and I (sufferer and mother of sufferer) know nothing etc etc. (Mind you, she does that about many things!)

She never has DS on her own so thankfully not an issue for us. Now he's 4 he's old enough to speak up about what he can and can't eat (egg and nuts mostly) and is pretty suspicious of food he doesn't know anyway.

Your inlaws have to understand that they can't just give the little one anything. Would they pay any attention if you did a really clear list of banned foods so they have no excuse - oh I just thought that one little cake would be ok etc.

Good luck. Be strong!

Mumbar, unfortunately some parents do assume a rash is caused by allergies but I certainly wasn't presuming you were one of them

OK, sorry I'm feeling very sensitive at the mo, off for pelic exam in a bit and worrying (prob unecessarily) about what they'll find.

and