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School advice

Discussion in 'Ask A Question' started by Alba37, Oct 7, 2008.

  1. Alba37

    Alba37 Type 2 · Well-Known Member

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    Hi Everyone! :D

    I'm new here and looking for some advice. I'm Type 2 and my son hasn't got a proper diagnosis yet but is being treated as Type 1. He's getting genetic tests for MODY as he rarely has good BS readings. He's normally high or low. He was diagnosed over 2 years ago. He was put straight to an adult clinic and I feel we have missed out on children specific advice.

    My immediate questions are related to school. Since he has not got good control he normally feels pretty unwell e.g. headaches, very tired etc. I have tried to arrange he gets out of class 5 mins early at lunch time, to enable him to take his BS and injection then get in to the lunch queue in time to get something to eat. It's been pretty hit and miss whither he gets out of class or not. Apart from that there is no other diabetic related help from school.

    I have an appointment with the school to reiterate the importance of him getting out in time to get lunch. I read recently he should get extra time in exams as his concentration can be affected and could hypo during an exam. (I never thought of this and am worried I've left it too late to organise) He has his (Scottish) prelims in Nov and standard grades in May 2009. I called Diabetes UK to ask if this is correct and they said yes. I am now worried there are things I should ask or discuss with the school... so my question is, can anyone think of anything I should discuss at the meeting?

    Any help and advice is much appreciated.

    A :D
     
  2. LittleSue

    LittleSue Type 1 · Well-Known Member

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    HI Alba37

    Make sure they also understand that hypos must be treated promptly and his symptoms (high or low) are part of his condition, even with careful planning they will happen sometimes and are not his fault.

    If your son takes his insulin before official lunchtime starts, how long is it before he gets his food? A long queue and could result in him going hypo before or shortly after lunch. If he's on a rapid-acting bolus he could inject straight after eating and if his basal is set right any delay wouldn't cause major problems. Or you could perhaps arrange for him and a friend to go to the front of the queue so his lunch is at a predictable time.

    Don't know the procedure/allowance for extra time in exams but a local diabetes group, or disability officer from the council education department may have experience or 'guidelines' about this. If not maybe contact the exam board.

    Hope this helps
    Sue
     
  3. suzi

    suzi · Well-Known Member

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    Hi Alba37,
    What age is your son out of interest? Mine is 10 next month. Schools can be a nightmare, ours is very understanding, and when Andrew was able to have school dinners (he can't now, because he was diagnosed with coeliac disease last year) the suppervisor always directed him straight to the front of the queue along with his buddy. Our biggest problem last year was a teacher who just couldn't understand hypos! Twice she sent Andrew down the corridor with BG OF 2.1 to phone home!
    He could easily have collapsed, hurt himself or anything. Of course i was furious and the second time it happened i was ready to rip her head off :x !! Thankfully this years teacher is much more understanding, and Andrew has 4 buddys who know him well enough to know when he's acting "funny" and remind him to test and act upon results. It makes sending them to school much easier :D . The only advise i can give is keep at them till they get it right, as unfortunately i'm sure your son won't be the 1st diabetic child to grace there school, Andrews school has 3 at the moment.

    Suzi x
     
  4. Alba37

    Alba37 Type 2 · Well-Known Member

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    Thanks very much for the replies, Sue, Tubs & Suzi,

    I had the meeting at school and yet again they have assured me they will act on my concerns. It's been half term here this week so I'll need to see how it goes when the schools go back.

    He normally takes novorapid before lunch, I forgot to mention about the queue problem, so I'll have to get that sorted or maybe he could take it after lunch as you mentioned Sue. He is very forgetful and I'm not sure he'd remember to take it after lunch, but it's definitely something to consider. You would never believe he's been diabetic 2 1/2 years... he's pretty hopeless, without constant reminders. He hates injections, has a needle phobia, and is painfully slow to inject. He's such a worry.

    No one has ever mentioned SENCO to me, something else I need to check on, Tubs, thanks. My meeting was with his tutor (guidence teacher) and head of year.

    Suzi, my son is 15 now. He was diagnosed at 13, after I tested him at home. He kept saying he thought he was diabetic after I was diagnosed (I'm type 2) and I did the test to prove him wrong! His sugar was high and went on to get diagnosed at hospital. The school has been inconsistent ever since! He has just had the initial blood test for coeliac, we'll get the results at the end of the month. He's suffered IBS type symptoms since he was 9. After reading about coeliac recently myself (always presumed it was IBS) I asked if he should be tested. Not too sure how I'll feel if he tests positive! We are witing to hear when the genetic tests will be done.

    He has been sent out alone to go to the school office several times when taking a hypo in class. I have told them it's just not on (again) and I've given them leaflets to hand out to all his teachers with basic infomation.

    I really feel we have had very little support and information. I will talk to the hospital again when we are there at the end of the month. I want to find out about support groups also.

    Thanks again for all your advice.

    A x
     
  5. Katharine

    Katharine · Well-Known Member

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    My son Steven is 16 and has had type one since he was 12.

    He has a pass to get out of class 5 mins before lunch. He is therefore early in the meal queue so he can choose what to eat. He tests his blood sugar and injects insulin at the table. He will test his bs in the class if he needs to and has glucose tablets and gel in his "survival pack".

    We are in Scotland too. We are very fortunate in that there is on average one diabetic kid in each year of the school and any reasonable request of ours has been accepted.
     
  6. hanadr

    hanadr · Expert

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    By law, the SENCO is acvftually one of only 2 people who MUST be named in the school's documantation. He.she has great power and responsibility. Those I know are excellent people. Definitely go to the SENCO
     
  7. Alba37

    Alba37 Type 2 · Well-Known Member

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    Thanks Katharine & Hanadr,

    I will find out about the SENCO at school.

    The members of staff I spoke to at the school insinuated they did not know anyone else there with diabetes, although I find that hard to believe. They certainly didn't show any knowledge.

    Katharine, Steven's routine sounds good. That's another way of doing his BS & injections, and also get in to the queue before it's too late. There have been times there is nothing much left to eat! I'm going to have a chat with my son tonight and discuss the options I've become aware of here. I really appreciate any advice, pointers and experiences, from everyone.

    I have felt really quite alone, and got myself in a bit of a state thinking they may be obvious things I've missed. I'm feeling better now, as I know what else I need to do and I'm also going to look for some support through groups and ask at the Clinic.

    Even if my son is diagnosed with MODY, I don't see what difference it will make to his treament? It will only be a diagnosis. He goes through phases of lots of highs or lots of lows, then things settle for a short while. It looks likes he produces insulin himself in fits and starts. It just seems so hard to control his BS, and he normally feels pretty unwell, exhasted, headaches etc.

    A x
     
  8. suzi

    suzi · Well-Known Member

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    Hi Alba,
    I'm dreading Andrew hitting the teens, all those hormones to deal with. Andrew tested positive for coeliac disease through a yearly routine blood test in feb 07 exactly 1 year after finding out he was diabetic. For some reason i took the coeliac news worse, though so many things added up. We reckon he was coeliac long before the diabetes. From the age of 3 he had painful legs, caught every cold going, had his tonsils out at 4 and 2 teeth out 6 months later with a severe dose of chicken pox in between, plus he was so skinny. Always managed to have a dose of the runs fortnightly and tummy pains, always put it down to bugs at school.
    I hope your son doesn't test positive, but if he does i'm here for you, cos it's a whole new ballgame. Sometimes a blood test can be a false /positive, if unsure ask for the endoscopy (tube down throat under sedation, biopsy of gut taken for testing, in and out within couple of hours, no side effects)
    Here in northern ireland for every 10 diabetic children 1 will also be coeliac, and unfortunately it was mine! But we manage, good luck with results hope there negative, though i know that'll mean why the symptons? and more worry.
    Let me know who he gets on
    Suzi x
     
  9. Alba37

    Alba37 Type 2 · Well-Known Member

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    Thanks Suzi,

    Marc had his tonsils out at 3 and always complained of sore legs too when he was younger. The IBS symptoms quite often appear to be stress related. He also has another (quite rare, I think) auto immune condition, it's a "boys condition," BXO.

    Marc has never had a coeliac test before. We get the blood test (and other tests that were done) back next week. I read he may need an endoscopy too. I had one last year myself (eeek) I didn't take sedation, but Marc will, if he has to have it.

    Hopefully Andrew will be more adjusted to his diabetes by the time the hormones kick in. Marc has been a nightmare and doesn't want to accept it. You would never know he was diagnosed 2 1/2 years ago. Every injection is a fuss as is every finger prick. He sometimes removes the needle 2 or 3 times before injecting.

    I'm glad I found this forum, it's really nice to not feel so alone. If I he gets a postive coeliac result you'll probably hear me scream help, in Ireland!

    A x
     
  10. suzi

    suzi · Well-Known Member

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    Hi Alba37,
    Has Marc ever been on a diabetic weekend? Andrew went on one organized by Diabetese NI in July 2007. He spent 5 days with 50 other Diabetic children ( 4 also coeliac) Ranged in ages from 6-12. He was unable to do his injection before he went, but when he seen 5yr olds do their own without any fuss, he done his and has never looked back. Our only problem at the moment is injection sites, he likes to do his tummy, but its really bad at the moment and has been told by his DN to do it in his legs, which he hates. He's so skinny, and its understandable it hurts, but he has no choice.
    Think i'm going to have to use bribery tonight, but know it won't last long. Sorry i can't think of any suggestions for Marc, though theres 2 really nice girls who have just joined the forum, both young 10yr olds and doing there own injections plus steven a 16yr old(his mum Katherine has been on the forum), perhaps he might like to e-mail them, have a chat and because there ages are close it may help him. Cos sometimes it doesn't matter how hard us Mums try we just can't do right for doing wrong.
    Suzi x
     
  11. Katharine

    Katharine · Well-Known Member

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    Hi Suzi,

    I expect you may know this but just in case, there are needles in 5mm (BD) and 6mm (novofine). We were given the usual 8mm initially because the consultant preferred them. Steven is a smidgen fatter than he used to be but still prefers the 6mm needles. This might help the injection pain a bit.

    Katharine.
     
  12. donnamum

    donnamum · Well-Known Member

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    ughter find the longer the needle the less painfull. Doesn make sence to me but if it works for her it works for us.

    We have a daily battle with school. Especilly with hypos and PE lessons. I have just prited posters with daughters photo on, as supply teachers are never informed of her being disbetic or epileptic. never mind what to do. she was shouted at yesterday and stopped from eating in class when hypo.

    Keep on to you sons school ans dont be afraid to put things in writing.

    good luck
     
  13. tubolard

    tubolard · Well-Known Member

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    donnamum,

    I'm sure you are aware, your school's SENCO should be aware of your child's condition. It is the school's responsibility to ensure that supply teachers are aware of who is in their class. However, that doesn't mean that it will happen. Your first port of call should always be the SENCO, if they are failing you and your daughter, then contact the governing body's SEN governor, it is a legal requirement they have one and it is their responsibility to ensure the school meet its obligations regarding special needs. If the school continue to fail to meet your daughters needs then the local authority (LA) has ultimate responsibility, your county councillor should help you contact the relevant officers.

    Keep pushing home the mantra "Every Child Matters", and they will eventually hear you.

    Regards, Tubs.
     
  14. suzi

    suzi · Well-Known Member

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    Hi Katherine,
    Yes we know about 5mm needles thanks, Andrew has been on them since diagnosis, we have a box of 6mm in the cupboard but he won't have them, tried sneaking them in and couldn't believe he knew the difference, but then he's a skinny sausage! Still kept though in case we run out then he hasn't got a choice.
    Suzi x
     
  15. Katharine

    Katharine · Well-Known Member

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    It is a pity that something based on mosquito saliva hasn't been invented yet for injections.

    The mozzie spits on you before sticking it's probiscus into you and you rarely feel it till it's too late.
     
  16. Alba37

    Alba37 Type 2 · Well-Known Member

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    Ohhh, just lost my post!

    Thanks Suzi, for telling me about Diabetic weekends. We have never been on one and I'm sure something like this would benefit Marc. I'll look in to it. Thanks also for letting me know about the other young members, I'll let Marc know.

    Marc isn't skinny, but would only ever inject in his tummy, if he could. He hates all injections, but can manage his tummy better than legs. How is Andrews tummy now? How is he managing in his legs?

    I'm going to do another post, I have some news! I managed to talk to a Diabetes Specialist Consultant Paediatrician who has kindly given me some pointers to discuss at Marc's hosp appoint next week. :D

    Also, the school emailed me a proposed Care Management Plan today, I'd appreciate any thoughts on it....

    Thanks again,

    A x
     
  17. Alba37

    Alba37 Type 2 · Well-Known Member

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    This is the proposed plan I received from the school today. :D I'm quite impressed with it, but I would really appreciate any feedback & thoughts you may have regarding the plan, please. (this has taken 2 1/2 years, but better late than never!) I realise there is no mention of "high sugar" so I will make that point in my reply. Thanks A x

    Care and Management Plan

    Context

    Marc is a diabetic pupil who manages his condition by injecting insulin four times a day: at mealtimes and once before going to bed. He continues to be monitored by doctors and staff at the Diabetic Centre who are trying to diagnose the type of diabetes Marc suffers from. Thereafter, they will work out the optimum times for treatment and how many injections he should be taking a day, so this schedule may be subject to change.

    At present, Marc goes into ‘hypo’ – when his blood sugar levels crash - a couple of times a week. He has no awareness of this happening to him until it does, but on the whole it is something he should be able to manage himself. However, ‘hypo’ carries serious risks, including unconsciousness and it is important that Marc is not left unattended for the whole time he is dealing with this. There are full details of how to manage a hypo situation below.

    On a daily basis, Marc needs secure and spacious accommodation to check his blood sugar levels, inject insulin and dispose of needles in school at lunchtime. It is important that he has time to do this and then get to the lunch queue in good time to allow him to choose something suitable to eat, that will not affect his blood sugar levels adversely.

    There will be times when his blood sugar levels will prohibit physical activity and when this happens Marc will report to the Pastoral Care Base and alternative arrangements will be made for him that day.

    Due to his fluctuating blood sugar levels, Marc suffers fatigue and he often falls asleep immediately after school and through large parts of the weekend. Another symptom he experiences is having blurred or unfocused vision at times in classes.

    How We Support This Pupil

    • Marc has been given permission to use the Disabled Toilets in both the North and South campus buildings to allow him to check his blood sugar levels and inject insulin, discreetly and safely. Both toilets with be equipped with a work surface, sterilising spray and a Sharps Box for disposal of needles

    • Marc should be allowed to leave his period 4 class at 12.45pm to carry this out

    • Marc is given permission to go to the front of the lunch queue and choose lunch without waiting. He will carry a card that makes this clear to staff and prefects on duty

    • Marc should be allowed to leave the room when he reports he is in ‘hypo’. He will carry a card that explains this in case he is working with a temporary member of staff or cover teacher who may not have a full awareness of his condition.

    • When he leaves the room, another pupil should go to the Office and report the ‘hypo’ to a First Aider there, who will come to where Marc is and assess whether he needs more assistance.

    • Marc normally carries food to control these episodes and he will return to class when he feels things are under control.

    • When Marc is unable to participate in Games, he will report to the Pastoral Care Base and an alternative arrangement will be made for him.

    • If his vision becomes unfocused in class, he should stop writing immediately and copy notes at a later time when his sight returns to normal. This means that there will be times when he may have to borrow another pupil’s jotter or – if possible or available – pick up teacher notes to supplement his own.
     
  18. suzi

    suzi · Well-Known Member

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    Hi Alba37,
    Well Andrew is now doing morning and bedtime injections in his legs and teatime in his tummy, and he's not a happy bunny, hates doing legs. Had read on one of the forums about Elma cream (works like the magic cream in hospital) bought some today and will try it shortly, Andrews just in from youth club and surprise, surprise he's 27.4!! swore he only drank water!!!

    Read your proposal for school and there response well impressed, congratulations, finally a positive result, well done. I know all children are different and when Andrews Bs is high he gets a bit tired, hungry, his hand writing starts to crawl across the page, gets sore head feels bit dizzy, and doesn't realize his high!! Can even feel as if he's low, and mostly says he's confused, any wonder. I had 2 phone calls this week to give him fast acting insulin at school because he was high, and today kept him at home to monitor him better, has to be his morning insulin, roll on hospital appointment 4/11.Sorry for rant, don't you find it sooo hard sometimes, cheered up by your news though. Andrew just injected after cream on leg for 20mins (ok if youv'e the time) Lantus is always sore to inject, no improvement, hopefully morning will be different. Suzi x
     
  19. Alba37

    Alba37 Type 2 · Well-Known Member

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    Thanks for the reply Suzi. Well, it's good news he is doing morning and evening in legs, I feel so sorry for the kids though it must be so hard. I just don't know if I could manage if I had to do it. :(
    27.4 tonight??? OMG :shock: He must have been feeling awful. What do you do when he's so high?
    Marc normally only gets up to high teens these days. He was 18 on Tue, and the school phoned me. He took some fast acting and drank lots of water and got it down a bit. You've had some week of it. Please rant away, I can totally empathise. To be honest I find it hard most of the time. Marc has been so depressed, it gets me so down & angry at the lack of support too.

    Let me know how the Elma cream goes, if it helps in the morning, it might be worth a try here too. Gosh, I never knew Lantus was more sore to inject. Marc complains so much I thought they were both sore, the same!

    Marc's highs have similar symptoms to Andrew's, and he can be unsure if he's high or low, but normally realises something's wrong. He does seem less aware of the lows though, and can be acting drunk and shaky without realising he's low.

    Good luck with your appoint on the 4th. We have ours on the 28th, I can't wait!

    A x
     
  20. suzi

    suzi · Well-Known Member

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    Hi Alba,
    Andrew always says the Lantus stings for some reason. We certainly have a time of it don't we, tonights plan of action for being very high, usual injection 10u lantus, light snack (1 GF biscuit 2.6 sugar and glass of milk) Plan to have a long lie in til about 10am, then he should be back down to reasonable levels (5-9) Andrew has to wait 30 mins after injecting morning insumane before eating, and if he doesn't eat enough can drop to 2.5 within 1hr, just in time at school for breaktime. Can you guess why i want to change insulin, i know perhaps i shouldn't let him lie so long on a saturday but life for him is restricted enough, a lie in for him is a luxury. In our household, breakfast on a Saturday morning is usually more of a brunch and because were Irish usually a healthy fry up :lol: (everything grilled of course)
    Hope all goes well on the 28th, i'll be thinking of you both
    Take care of yourself
    Suzi x
     
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