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RED TAPE MADNESS! School wont add melon to 'avoid list' unless formal diagnosis of 'Melon Allergy' and the hospital dont test for melon anyway lol

(5 Posts)
twobluesandapink Tue 21-May-13 12:01:54

Our DD is 8 has dypraxia, hypermobility & eczema along side a severe nut allergy (a nightmare for a mum of a dyspraxic child as she touches everything!) She is a lovely girl who blends in at school as she is polite, all her frustrations of school are saved for home time bless her sad She has very little understanding of school life as she just thinks of it as play. Her new teacher knows she has many issues like concentration, memory, organisation and as far as writing, numbers and home work goes well its very obvious but the head will not see any 'sen' need at all so we are fighting everything sadly.Right now we have 2 issues with the head, our wanting of 'sen' help for our DD and a need for a care plan for her nut allergy (we had one when she first started sch but then needed to add to it but was told we had to fill in a CAF form to get one as they have no school nurses now. At the same time we have some new things to add to her list of 'please avoid' .... Very intrusive form (wanted to know very personal stuff on my disabilities!) we have found out that 'someone' feels there are 'safeguarding issues' (they feel we are 'pushing' for medication and attention she doesnt need) I had a 'school' nurse from another area ring me and quiz me on the phone for half an hour about what made me feel my DD had any allergies full stop? as 'she has never had to use her epipen' she asked who was with me when a reaction of any sort came up, then said if there was 'evidence' and a 'diagnosis' for every named food or item it would not be recorded on a care plan . She when on to say she had spoken to my DD's pediatrician and said they want to have her fully diagnosed with any food allergies and intolerances before they will be taken seriously, to which he apparently said 'no problem I will get the forms sorted' *I have no problem with testing, BUT it would have been nice to have been included in the choice! also now I know the fruits that she is having issue with arnt on that list anyway so I cant help but think how the hell all that testing is going to help her and the school? There are professional meetings and letters to and from from our doctors & consultants via a school nurse, I found out by mistake at the doctors! I see a letter on file asking for written evidence of all contact they had from us about issues with our daughter etc! We have been told we cant add anything like melon to her list unless she has a formal diagnosis for 'melon allergy' same goes for some plasters that our hospital said she reacts too, but school say they wont be avoided unless each 'item' has its own diagnosis, even our hospital said it wouldnt run tests for melon etc but just to avoid it so why is our school being so horrid? Ive asked a couple of other mums how they have got on with medical things as Id overheard her explaining to the office her DD was 'allergic' to alot of sun creams so she was only allowed to have her own on and to make sure a teacher didnt just pass any bottle to her..... she said 'they were great, just said write it down and we will make a note of it'! Another mum said 'I told the head my daughter was at risk of bladder infections if she didnt drink enough through the day and as she does like water we have to use juice to entice her' Whilst I have no issue with any other mum doing whats best for their child I am starting to feel victimised and hounded sad

If others dont have to have a formal 'diagnosis' why do they keep asking us for something that the doctors and hospital say they dont offer anyway sad( My daughter does have a diagnosis of nut allergy as she has epi pens at school but there are times when new foods cause reactions and even if not life threatening should still be avoided where possible. I did ask for the list of what the hospital can check for but like I say some of the ones we know make her ill arnt on there to test, so you just keep going round in circles! Oh and in the easter holidays we had a letter from the school saying the outcome of the MAGGS meeting was our DD had to 'get out more without mum and dad'!! erm ok so whos gonna make sure she doesnt eat anything with pnuts or fall off the top bunk (as she has no fear at all) she needs someone to be able to spot the signs of any analytic reaction and be able to administer her Jest pen? The answer they say? A support worker! Well, erm ok, I do worry about safety (in my eyes its my job) who are they where are they and who pays? Theres a list, they can be dif ppl and you pay! So I want a school care plan and I get told my DD needs to get out more and I have to sort and fund it ? lol F Off! Sorry but what a #iss take the whole bloody thing still didnt get a 'care' plan so I am worried that it was never set up for that in the first place sad **Sorry for the essay (I cant be concise or logical now sadly) all other posts will be short promise!

Hoophopes Tue 21-May-13 12:45:19

How frustrating. Fr what it is worth my hospital does not believe in allergy testing and does allergy identification by exclusion diet. You can do skin prick test to any food as long as you provide the fresh food yoursel so perhaps request that.

Can you get the paed to write to the school? Or request a joint meeting with health and education people.

The fact she does not need to use the epipen is due to good preventative matters.

If you are not happy with the school is it worth contacting a higher authority than them? Or even letting Ofsted know you are unhappy with them? I would take notes of every phone/email/letter and keep it as evidence against them if it is needed. Let them know you will take action with appropriate authorities if they do not deal appropriately with your dd.

twobluesandapink Tue 21-May-13 14:03:55

Oh Hoophopes I do soo admire your flow of writing sigh Thank you for your kind words smile Our school became an Academy in December last year and sadly I was 'fogged' by our head explaining that as my DD isnt SEN the La will have no input what so ever (even down to the lovely ppl in the Parent Partnership sadly) I have spoken with our La and strangely enough I spoke to a young lady who listened beautifully and then said I would like to say 'off record' 'you are not alone with this particular school' I was so shocked she actually said it I didnt want to put her on the spot by asking more (she probably couldnt say anyway) but I did thank her as at times it does feel a conspiracy theory! She gave me ipsea & ACE details who ive been in contact with and both were very dismayed about how it was being handled but both said it is very different when its an Academy (apparently?) I have made a note about the peads letter (hes a nice guy but very much the 'Im not sure what good that will do' person but I will try to be open without seemingly sounding like a woman whose watching for SS to knock on the door lol. We are lucky in that we have an appt this Thursday so I will let you know how it goes, or, you could visit me in my padded cell after for a catch up? ;)

I have been in contact with ofsted many times (I even met them over there to hand deliver a complaint as the school had been without DD's epi pen all day with out knowing they had mistakenly sent it home after a school trip (along with pages of 'sensitive' information on foundation and yr 1 pupils! names addresses, medical information, school 'concerns' ie 'home abuse suspected etc ..... The emails to the school had only been ignored so I took the bull by the horns. The inspector took the letter and despite me following it up I was eventually told on the phone 'its not in their 'area' to follow a complaint like this up and to take it to the school'. Which I had done anyway (I had given the school a copy of the letter to ofsted just after I handed it to the inspector as I have always believed in being up front and honest) The complaint never see the light of day as numerous times they letter didnt make it to the governors meeting strangely! But I was called into the heads room (first time in months as she refuses to see me lol) She told me that whatever my intentions I should know that nothing I could show or do would 'rub off' on her and could only look bad and 'hurt' the others in her 'team' ! She then went on to say 'well you could have gone to the papers if you'd wanted as no one would have believed it anyway' That was the day my view of our head changed forever, till then I had just thought she lacked leadership qualities, it never crossed my mind that this bubbly smiley lady has a nasty streak one bit!

That aside Im sad that once again it school disco night coming up this Thursday and all the 'talk' of how the school will meet with the parents to discuss the arrangements for keeping a child safe ie by supplying the name of the food & drink available so I can check the labels and who was going to be in charge of her epi pen should she feel ill etc will once again never happen. The heads view? Its best not to send her if Id worry! Grr.

I have kept all the emails etc like you mention but its very sad as they will not provide a paper trail one bit! So we write and email then they call or nab us over the school .. sneaky! If the school wasnt just meters away and my daughter wasnt happy I would have took her out but the with staff are soo lovely and I just keep hoping that after 6 years the head may just 'move' on!

Once again a stupidly long post sorry! I promise to work on that ;) Well till Thursday then smile) xxx

Hoophopes Tue 21-May-13 14:28:14

Are there other schools you would be happy with? Am not sure how being an academy changes things. If you not happy with the school I would look at finding one you would be happier with and has better sen and allergy provision?

chloesmumtoo Fri 24-May-13 12:47:25

Hi, just to add our pead used to do our skin prick testing for our dd and if they never had the test solution to anything we were just to bring in the food item. My dd got very upset after eating melon with hives and a red mouth. We took in melon and its juice was rubbed onto dd's arm to be tested and done like any other skin prick test. My daughter did come up as positive and told not to eat anymore. We always took in food items which we wanted testing. My dd has many allergies and is also peanut allergic with epipens.

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