and school.

[mumbar]

Hi, I have met many of you as myself and DS have become aquainted with the allergy world this year.

I did post at one point (poss in AIBU/primary ED) about the school secretary refusing to give DS puriton at luchtime for hayfever as the bottle said 4-6 as required.

I have now given the school epi-pens and they have asked the school community nurse to come in to draw up a care plan for DS. Secretary has said I 'may' get invited.

I feel I should be invoved in this process - is that right?

Also as the bottle of puriton on says 5ml the school can't give him more.

I have contacted the pead cons PA and asked if a letter from consultant can be written stating the dose he can have (eg initial double dose of 10ml) and have a bottle from GP that says 'as directed by consultant'.

I am hoping that the school will be on board with me about giving him puriton 10ml and then more if neeeded as opposed to a smaller 5ml then needing epi-pen (so far this has worked for us).

So am I right to be pushing school to do what I know works or is it the community nurses decision about DS treatment in an emergency??

TIA for the advice (again!!)

My advice with my sons preschool is that they will not do anything that is not directly as written on his medication. I would say you need to get the community nurse (or whoevers writes his care plan to make sure it has what you expect school to do). A letter from consultant/GP will be fine but they won't do anything without it being confirmed in writing by medical professionals.

My son had problem earlier in the year which lead to a night in hospital and being on a nebuliser. He was sent home with an inhaler and we were told at hospital that it may be the start of asthma and to keep the inhalers with him in case he had another attack. School won't even have them on the premisis as the hospital didn't give me a written letter explaining this.

My advice would be to get it all in writing from the medics then school will be fine.

Thankyou. The school are happy to give him 5ml chlorphenamine for a reaction. He has a bottle of it stating 5ml every 4-6hrs as required. They will also give him a regular dose 5ml at lunchtime as he has another bottle (identical!) which says 4 x a day. However he no longer is to have it regulary and has been switched to Cetirizine tablet daily and chlorphenamine for reactions.

They will give him 5ml for reaction and give the epi-pen, even before a care plan is drawn up.

What I hope to get out of the care plan is 10ml for reaction, and epi-pen/ambulance if required. The letter from the consultant will lay down what dose of Clorphenamine is OK/ recommended.
The bottle says 'as directed by consultant'.

Therefore I'm hoping that myself and consultant can, in a way, dictate what the school does, and I will get a say in his care plan.

Obviously when they are in loco parentis I have to trust they'll do the right thing, and I know they have to stick by rules. I'm hoping a medic letter will be the 'rules' they have to follow iyswim?

I'm sure it will be. School would be on very dodgey ground if they didn't follow the advice on the consultants letter. The consultants letter would overide any 'standard wording' on medication bottles as medication usually states 'use as directed by doctor'.

Thankyou. Thats what I hoped. I'll let you know how it goes.

Got a phonecall today - Care plan meeting in 2 weeeks and I'm invited

I have cons pead letter which she cc'd to school nurse (i'll take my copy in case)

Letter/ consultation basically states that DS severe reactions are controlled atm by Chlorphenamine, and repeating the dose if required and the epi-pen is a safety net in case previous methods fail.

and also says they are unusual and no clear allergens so hopefully they'll accept it can be allergic reaction even if he's not had ketchup.

You should absolutely be involved and it's good that they've invited you in - if you've time, take a look at this food allergies in schools document which has been put together by a pile of allergy mums (or is that a gaggle of)

www.foodallergymums.com/index.cfm?fa=contentGeneric.glvmhtaexkmtakmq

good luck - let us know how it goes

Fab website topiarygirl Thankyou. My DS is non food allergic (and not sure what to allergic!!).

I especially loved the bit about other children recognising symptoms. The thing for us is DS' allergens are most likely airbourne and possibly unidentifiable. It is especially important staff and pupils should be on alert if DS suddenly lays down when outside - he should be checked to see he's ok and not just being a lazy sod

I think becuase he's never had a reaction in school and has no known allergens the processes have not been considered.

Mumbar - I'd be really pleased to add information on managing non-food allergens in schools - would you be able to put something together for the site?

Certainly I can try. ATM we do not know what is causing these reactions. They are unusual. His IgE results are normal so he's not naturally atopic. The consultant has said they are unusual and asked for RAST to grasses and HDM. I'm awaiting these results.

What sort of info do you want/need?

Wow that sonds tricky!
Really the practical ways in which you and your son's school are managing his reactions in school. How they are on alert - what for, hwo they are trained etc.
As little or as much as you like
thanks so much - it'll be great!

Well I have had problems with the school. Mainly getting them to recognise hayfever (poss grass pollen allergy - awaiting RAST test results although I'm not holding my breath for any answers atm ). DS symptoms are the usual itchy eyes/skin, hives on face, aggitated etc. Trying to get people to recognise it as allergy not just an inconvenience has been a battle. He does have severer reactions occassionally.

Now that it has been recognised that he has allergic reactions as well as the hayfever (and prob similar if not the same allergen) and he has epi-pens they are taking it more seriously. The main problems faced are getting people on board. Not treating me as a PFB over reactive Mum but of a mum with a DS who has an allergy, who doesn't have the answers herself (and wants/ needs them).

DS has not had a reaction in school. Once last summer he was on Chlorphenamine 3x a day (am, after sch and before bed). He went to the secretary at lunch and asked for a dose. It was refused 'as there was nothing wrong with him'. By the time I collecetd him he was very flushed with some hives and eyes very red raw, black and puffy underneath. I took him to the GP who then confirmed I was correct in treating it as hayfever and prescribed him 4 doses a day so the school would give him a dose every lunchtime.

From this I would say the most important thing is to be sure you make it clear to the school what the symptoms are - that allergy isn't always necessarily a quick and serious reaction and sufferes can tell when they are reacting to something before any obvious signs and symptoms. Even now (haven't had the care plan meeting yet) all I get from the school is we're all epi-pen trained. Yes, great, very reassuring. . But more information IMO needs to be given about the different allergic reactions and degrees of seriousness. That anaylphaltic shock is the worst case senario and if treated correctly can be avoided in some cases.

For me its all about the risk assesment. For example you know a child with food allergy is high risk during cooking sessions, lunchtime etc (although I do fully appreciate cross comtamination). DS just seems to be at risk. He could be in the class room, playground, lunch hall, library no one knows - there is nothing to avoid, no way of limiting the risk.

Having said that though, he seems to have less reactions than an atopic child or child with food allergy. If you discount the 4 months of hayfever he only had 7 reactions in total last year. 2 minor, 4 moderate and 1 severe.

What I'll do is when I've had the care plan meeting I'll write again about what was discussed. How the school reacted, what is going to be done and anything the school nurse suggest as well.

As mentioned above the main jist of what advice I could give (and would have liked) is the difficulty is getting allergy recognised when you can't simply say 'X is allergic to x,y,z when he inhales, digests or touches it'

That's really tricky. I have a similar situation with DS - he's idiopathically anaphylactic - i.e. his body just flips him into anaphylaxis when it fancies doing so.

The lessons for the school (and for him - he's 8 now) are similar to yours - recognising when he reacts. So how do we manage this:

• his photo is in the staff room and in the playground with details of his condition (symptoms and treatment)
• He has a medical kit which follows him (he takes it from the classroom teacher to the playground assistant)
• His condition was explained in school by means of a bravery certificate which he took to show each class - on his exiting the teacher explained what the children were to do were my son to have a reaction.
• I up-date on all reactions and with this I really do labour the point - terrify the school on how quickly he can react and how important it is to get antihistamine in him to slow the reaction.

And, for what it's worth - I am lucky to have the support of the Royal Free who are willing to invest on trying to find something which triggers him - I may not find out. I do know he's allergic to 'posh' tree nuts, birch pollen and somewhat to grass pollen. It's terrible not having the answers and I have had GPs saying 'if you have the epi-pens why do you need to know?' (git - but you can see the point) but I'm staying with it and I'm pleased you are too.

Love to hear from you after the care plan is written
good luck!

Thankyou. (have namechanged btw!)

Its 'nice' to meet someone who is in the same boat as me and DS. I'm hopefull the grass pollen RAST will be negative whilst at the same time positive because it shows there is actually an allergy and allergen iyswim?

DS severe reaction was to seemingly nothing. He had suddenly become itchy and hives n face 6 hours earlier which I treated with chlorphenamine and then this - he was getting ready ready for bed at the time. Both times he was in his bedroom near his bed so all I can think is something there set him off?

I expect he has but has your DS been tested for C1,C3 and C4 esterase inhibitior? Apparently this is a protien or something in the body which can set off a reaction. DS' is normal.

Thankyou for the advice above, definatly will help me when talking to the school next week. Sometimes I feel like I'm totally over reacting wanting every eventuality covered but I know if one day anything happens I'll be glad.

Yep - we've had those done - what we're hoping for is that we can get funding for an across-the-board test (I think it's called the Jacob's test) which can be undertaken by the Immunolgoy department now at the royal free which uses chip technology to test a single blood sample against 3000 potential allergens! That may give us a clue!

What's an allergy and an allergy iyswim?

And you're not overreacting - just being a good Mum following your instincts!

An allergy and allergen. Just meant sometimes its hard to people to accept there is an allergy in a child who doesn't have an allergen that sets them off. EG if a child has a reaction to peanuts (so peanuts is the allergen) people will say the child has a peant allergy. I just say DS has allergies - and often get asked what too? When I say I have no idea atm I usually get the look.

LOL - I was confused by the iyswim - finally got it - I reckon I might be too old for these chat room acronymns ..

confused me too at first!!!