School not taking coeliac disease seriously - I am so upset I am hyperventilating

[yellowhouse]

My DS1 was diagnosed recently with coeliac (and so was my other son but he's not at school yet). Unfortunately he is a very severe type of coeliac which means despite showing very few symptoms he was found with total villi atrophy and also his blood test showed he was in a very poor state of health.

I have discussed this with the head of KS1 and with my son's teacher, the kitchen staff etc. The kitchen staff have been great and so I was quite relaxed about everything. They have been doing food at school and cooking and I have sent in free from flour, etc...

My son looked very tired and extremely grumpy and I suspected he'd eaten wheat but we are very strict at home and hadn't been out but I put it down to paranoia. Today we were baking a cake and he told me this. "Mum, I am really scared when we cook at school, because the teacher always forget to label my special stuff and just makes me eat any of it. I tried to say no and she told me not to be silly and just eat it that I'll be fine".

Now I do believe it as he was really uspet and I put two and two together. I also haven't seen any photos of him anywhere, whilst they do have photos on walls of children who have allergies, I am getting the impression that the school are not taking this seriously. I am really upset but I can't go in now as it is half term, so I will just have to wait.

I am sure I will calm down but just wanted to know if anyone else has been in this ludicrous situation before???

Clam I was referring mainly to this comment:

"If anyone says "I'm allergic" I look all concerned & ask if they have an epi-pen?"

re the epi-pen comment...please do not think I would use that in any context where there is obviously a genuine problem. I would not wish to offend & obviously would say nothing if in doubt.

I am aware of what one is used for and the problems with all sorts of dietary intolerances. My daughter suffers from them too so i don't take them lightly. That said she is NOT allergic, she has a food intolerance.

If you are truly allergic ( & as I said it is an overused word) then you may need either an epi-pen, pure adrenalin or other emergency intervention, it makes me cross that it used in the wrong context.

My problem is with the "allergy = epipen" assumption, which is false. Epipen/adrenaline is for anaphylaxis which is not the only sort of allergic reaction. Just because someone has not been prescribed an epipen does not mean it's not an allergy.

clam if someone tells you there child has an allergy, why not believe them? I know people with children who react to foods and just learn to avoid them as things are manageable that way. they don't ask to be referred to allergy clinics as they assume that this is normal and manage it as such. It's still an allergy and not to be taken lightly!

bossy how would you know if someones allergy is serious or not? Your child has intolerances so you say you understand. But, intolerances like allergies have varying degrees of reactions. with intolerances it could be anything from stomach cramps to vomiting and diarrhea which for some people is immediate and delayed in others. Sometimes if it is very severe it would need medical treatment. with alllergies the symptims could range from hives to facial swelling, to anaphylaxis to death. The reality with allergies is that you never know if the next exposure will be the one which causes someone to stop breathing/ die.

I keep hearing about people who have 'lied' about their child's allergy before. How do you actually know they have lied? Would you want to see someone react before you accept they are telling the truth? What is wrong with society if people can't just accept thst someone is telling the truth? The vast majority of parents want the best for their children and want their kids to know right from wrong. why then woukd they lie? And who is anyone to judge them in this way?

Allergies are growing at a very fast rate. No one knows why? The ONLY safe course of action is to avoid the allergen in all its forms. Multiple allergies are also becoming more common. Again no one knows why. So when people roll their eyes or think 'oh no here comes another one' it makes thing even harder for those of us who have allergies or care for someone with allergies. We CANNOT afford to be complacent.

Sorry to add to the outrage of assuming that intolerences are not serious. There were several before the epi-pen comment.

Intolerences can be very serious, can inhibit absorbtion of nutrients and result in development and functional issues with many different organs, lead to malnutrition, weakened immune system, a range of psychological disorders and long term fertility issues to name but a few. Accidental exposures to culprit food can take weeks to recover from.

If a parent has informed school of a food issue, no one should ever presume to second guess their validity.

Well thank goodness the epipen thing has been sorted. I have one with dairy allergy and one with lactose intolerance. All verified and treated seriously by school. op I am sorry you feel misstrustful of the school. I would suggest digging out a very clear paed letter and arranging an appointment with the head. Get a care plan in place and ask for a copy.

My ds used to be wheat intolerant (his dad is) and I never made a big deal about it with school because it was pretty minor in comparison to coeliacs and the other allergies/intolerances mentioned here, but they were aware of it. I had a phone call from the headmaster one morning quite upset because ds had had half a croissant at 'French morning' - I reassured him ds would be fine (he was) and they treated the incident as a learning exercise in ensuring their staff are vigilant to food issues. Ds has always been extremely responsible about his intolerance (even as a toddler, my mum took him to a Hallowe'en party and said 'oh have a fairy cake ds' and ds said 'no Grannie, I can't, it has wheat in') - and he would be very distressed if a teacher had made him eat something he knew had wheat in when he was younger.

mumat39 I wasn't particularly referring to parents informing the school - although we have a fair few cases where we've stopped children from eating/handling certain foodstuffs because our records say there's an issue and then we've been told subsequently (on a couple of occasions by parents complaining that their child has been "denied" something) that "oh no, s/he's fine now, that was ages ago."
I'm thinking of a Healthy Lifestyles activity run recently as a club, where children were tasting various fruits/granola/yoghurts etc.. All I could hear wafting through my door was a barrage of children calling out that they couldn't eat this or that or the other because they were "allergic." Nothing on their records to say so, however.

Bossy - I hope this thread is expanding your understanding of allergies. My dh has never had an epi-pen, because he has never suffered anaphylaxis, thankfully. He has had a collapsed lung, though, and frequent hospital admissions for asthma as a child. And has life-long scars from eczema.

You cannot say 'allergy is only real if someone has an epi-pen'. Wrong. An epi-pen is only used if someone is at risk from anaphylaxis. They are not doled out as a badge to prove you have a real allergy.

Some people with allergies need epi-pens. Many people do not. They may well still suffer from very real allergies with very severe consequences.

Clam - I think because allergies are so common now children pick up on them. My ds has tried it out for size - when he was in reception I remember him telling me, hopefully 'I'm allergic to XXXX, aren't I Mummy?' He'd heard someone else saying it and obviously decided it was the thing to be. Much as he tried to persuade me he needed glasses when his best friend got them, even though he'd had a 20:20 eye test only weeks before...

Quite different from real documented allergies that parents have ensured are recorded and known at school.

Hi clam
That sounds a bit rubbish on the part of those parents. I must admit that care plans were reviewed every year to add/remove anything that had changed to either safe or unsafe.
I have had problems with my DD's nursery where even though the plans are current and they know everything they need to know, the plans were still ignored. This put her at risk of a bad reaction but fortunately she was ok but this now means that I have little faith in them. In the last week another child was also put at risk because of the almost exact same situation but this time with a different allergen.

As a govenor and a coeliac mum i would be horrified about this, my DS is given his own section of the classroom if they are doing anything with gluten in. He is very very good and very vocal and just would not eat anything with gluten in and would have told the teacher so (he has horrific tummy ache for 2 weeks afterwards and horrific running down his leg diahorria within 2 hours) because they have seen this our school are really good.

I would be asking to see the risk assessments for cooking in class and pointing out "every child matters"

Edam- I am well aware that not having an epi-pen doesn't = no allergies!

A sarky comment to someone who is patently NOT allergic to anything has been taken out of context.

Obviously I wouldn't say it to anyone I was unsure of or who seemed genuine.

Apologies if I've upset someone , my warped SOH has got me into trouble yet agian so I shall leave you all to it as I don't want to derail the OP's thread which is far more important

OP hope you get it sorted & your DS is OK .

Whilst you have every reason to be angry I think I would find out what actually happens at cooking time. The teacher telling him that he must eat it sounds terrible and I'm just wondering if there hasn't been some sort of misunderstanding. Children being forced to eat their own cooking during school hours - is this normal?

Having been a teacher, I am so sorry that this happened to your little boy, but although in the old days I can also see how this could so easily have happened, in this day and age teachers are expected to find out in advance of any food activities whether children have any problems, and adhere to that strictly. That said, unfortunately, teachers do not get any training on this issue, unless the Head arranges it, and therefore unless a teacher has personal experience, they are unlikely to know anything abut the serious nature of this problem.

I would suggest you make an appointment to see the Head, explain the situation and ask if the school nurse could address the staff, at a meeting. This happened at a school where I worked, where there was a child with a nut allergy, who needed an epipen. Any whiff of 'namby pambiness' was immediately dealt a blow, by the nurse's obvious medical experience. The school nurse was accompanied to the meeting by the mother of the child - to put her mind at rest that the subject was covered properly and also to answer any further questions that the staff wanted to put to her.

Hopefully, the Head will take on board your situation, but just to make sure, a letter from your Dr might also come in handy. In the meantime, obviously, your son shouldn't eat anything from cookery lessons etc. at school. You might send in a letter to your child's teacher to that effect too.

trouble is everyone you meet,or certainly me,you end up educating them in what it is you have,then they still dont get it.for school i would get your doctor to write to the teachers concerned then they are profesionally informed.