# When do I send my 10 year old diagnosed child back to school?



## Tors (May 2, 2010)

I have a son 10 years old and am very anxious about sending him to school he has just been diagnosed with type 1 can anyone give me any advice or their experiences


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## Sugarbum (May 2, 2010)

Hi Tors,

Welcome to the forum. Sorry about the new diagnosis. Im not a parent, but there are plenty helpful people on here who have been in your position who will share some advice Im sure.

Welcome again, and all the best. Hope your son is starting to feel abit better.

Lou x


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## Heidi (May 2, 2010)

Welcome to the forum!

My son Ross is 12 and diagnosed with Type 1 about five weeks ago. He went back to school two weeks ago - once the Easter holiday was over. There are lots of opinions about this - some people send their children back as soon as they're out of hospital. We didn't do this mainly because there was only half a week left until the Easter holidays. I think even if the holidays had been close I would probably have kept him off a little longer anyway because both he and I (and his twin brother and my OH) all needed time to get our heads around diabetes. More for me, I needed to accept that he isn't made of glass - although I haven't yet come to terms with that to be honest! 

I think the best answer is for him to go back when your DSN recommends and when you feel confident that the school has all the necessary care plans in place. 

When Ross returned the SENCO was stuck in the USA because of the volcanic ash (apparently she's still not back....). I went in with him and spoke to another member of the special needs team who works in their medical room. I had all my initial fears put to rest - they already have two other T1 pupils. It was explained to both of us how Ross would go to the medical room whenever he needs to test his blood or to inject. He isn't allowed out of the room unless his blood is within range. If he's high they make him run up and down the stairs outside (!!) and in fact he was just two points above the other day and they 'phoned me to ask what was the best way forward as he was about to have lunch - unfortunately it was the beginning of Ross's blood levels being all over the place - they're still not settled  However, they did the right thing and I always feel in the loop. 
We're just trying to sort out how to get all his readings through the school day properly recorded - I think we'll go for a new Bayer Contour USB meter - hopefully the shiny technology will be appealing for him and he'll make sure he plugs it in to the PC at home each day! 

So in short I think you need to speak to both your DSN and the school - they'll guide you. Don't forget though that very, very quickly you'll become the expert and it won't all feel as scary as it does right now - and I'm speaking from very recent experience on this one! 

Good luck and keep in touch on here 

Heidi
x


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## Patricia (May 2, 2010)

Agree with Heidi on this...the only thing I'd say is that in my view it's quite dangerous for any child with T1 to have to go to the medical centre to test. When hypo, a child should not be walking anywhere to fetch anything. Things can go downhill very, very quickly. 

Just my view! But I would be very uncomfortable if E had to walk anywhere to test....I can imagine it being different in primary school -- kids not so careful with needles. But they are also with one teacher much of the time, so the teacher could always have the kit and pass it to anyone else, etc. Or it could be in a bag which the child can reach in the room. 

It's incredible how close an eye they keep on Ross though -- heavens! It shows they are aware of what to do. E's school wouldn't dream of doing that. We have a point of contact and ways of communicating, but he is completely responsible for making decisions about his levels -- which is sometimes the right way to be, and sometimes the wrong way I think! Interesting...


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## Tors (May 2, 2010)

thank you soooo much for your reply its all very scary I will certainly take your advice and make sure everything is in place when he goes back


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## Tors (May 2, 2010)

Thank you!!


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## Heidi (May 2, 2010)

I think with Ross that things will move on as he gets older. I agree that him going to the medical room isn't ideal - he's had one teaching assistant initially refuse to let him go to test - she told him to 'just faint then and we'll get your epi pen'. You can imagine I wasn't best pleased at this! But on the whole they've been good. I'll be happier when the DSN goes in - I'll be going in too and we can 'fine tune' things. 
I'd prefer him having his testing kit with him at all times and being able to test as and when he needs but he can go to the MI room whenever he wants. If he feels low he has to take someone with him and if he happens to be in a classroom on the top floor they go to him - at a run! 

We'll see how it progresses - it's been okay so far but we are only two weeks into school. 

H
x


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## Tors (May 2, 2010)

Thanks for your advice and your tips on testing and keeping a kit in the class.. useful!


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## Kei (May 2, 2010)

I was lucky (if that's the right word in the situation!!) that both of mine were diagnosed at the beginning of holidays.  

F went into DKA in the first week of the summer 2009 school holidays, so when she got home from hospital she had 5 weeks at home to get used to things before starting school.

J was diagnosed at the start of the February half-term holiday, so he was at home for a week before he had to go back to school.

When they started back at school, both times the DSN went in to speak to the staff, and on the first day I spoke to the teacher and explained what they would need to do, and handed over the kit they would need.

Luckily our school is great, our DSNs did a good job of explaining everything to the staff, and there is one particular member of staff who has a type 1 son herself and is therefore able to advise my children's teachers if they are worried.

Both of my kids keep a testing kit in their class.  F has hers in her school bag, and J has his in his snack bag, which the teacher keeps in her desk.  They both have an "emergency box" in their classroom too, which contains spare testing strips; lancets; glucose tablets; biscuits; mini choc bars (for before PE lessons); Glucogel, emergency information sheets and phone numbers for us, the DSN, the children's ward at the hospital and the doctor.  The teachers keep a sharps bin in the classroom too for used lancets.

I also filled in and printed out a sheet (from here http://www.childrenwithdiabetesuk.org/diabetes-at-school/diabetes-at-school-for-parents/ ) which is kept in the class register for substitute teachers.  There is a lot of useful information on that website. 

A teacher or teaching assistant helps J with his tests, but F does her own - usually with a friend.  They have a little diary (just an ordinary small 2010 diary) with their school testing kit, and they write the number down in it.  If they are very high or low the school phone me or the DSN, but they're very good at dealing with hypos and slight highs now.

I hope all goes well for your son.  Once he settles back into the school routine he will probably adjust well to it.  Both of mine (age 5 and 7) settled back in very well indeed, without too much fuss.


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## Patricia (May 2, 2010)

I guess I'd say that feeling low and then walking anywhere is a bit dodgy? Once the DSN gets in, I imagine chats will be had, as you say... It's just that quite literally he could go down just that increment more and then with the walking down goes the level more, etc...And I suspect it takes then that much longer to recover...?

Once E was on the school pitch, and he had forgotten to take his kit out with him. He felt low, so went back to the changing rooms to test. When he got there, he *was* indeed low, and treated. Went back out to the pitch (low all the time!) where he told the teacher how he felt. The teacher, understanding nothing, said he could stay and referee then, which consisted of him walking up and down the pitch etc! 

It was early days, and E not strong enough in himself to insist. But as a consequence it took him several hours to come up to a decent level.

Also, testing 'as and when' is less life disturbing, less of a fuss. In the long run it will be less of an interruption to daily routine for our kids to be able to test when they feel like it -- and will also encourage more testing, I reckon.

How I wish we could educate everyone -- esp teachers -- about all this. Flipping daft comment, Heidi. You did well to keep calm!

xxoo


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## marynf (May 2, 2010)

Hi!  I've been reading this forum for a couple of weeks but not yet posted.  I hope our experience might help.

S was diagnosed on the Monday of the October half term.  She is in Reception at an independent school which has boarders so there is a full time nurse on site.  By the time we were discharged on the Monday night the DSN at the hospital had contacted school and established that the nurse was willing to be trained in Type 1 care.

I spoke to the head teacher during half term and arranged for staff who would be involved with S on a day to day basis to have a quick meeting on the following Monday.  This included the catering dept.  I discussed signs of hypo, treating hypo and what to have for lunch (she was sooooo hungry).  I stayed around near school for 3 days, ready for anything - was never needed.  I did go in at lunchtime, test her and give her Novorapid, but then went away again.  I drank a lot of coffee that week!

The DSN was booked in for a training session on the Thursday.  All teaching staff who would have significant contact with S - teacher, assistant, head, extra person in case all those were ill (!) as well as the School Nurse - were involved.  The DSN went through pretty much everything she had said to me when we were in hospital and left them with a foam pad and a saline pen to practise with.  They all did their own finger pricks, and one of them even stuck a needle into themselves, something I have not yet done.  The DSN said she rarely came across a school who were so keen to help and so ready to take it all on board.  I know we are incredibly lucky.

From the Friday, therefore, the school have been in charge of S's care during the school day.  Blood tests are done in the classroom three times a day - before break, before lunch, and before the end of the day.  There was often a little gaggle of 5 year olds round S as she showed off her 'magic finger', squeezing drop after drop of blood out.  She was initially injected in the head's office (privacy protocol) but since S is used to being injected in public I said I was happy for this to happen in the classroom which has made it much easier for the staff.  She had an intrigued audience for that too and seems to feel quite special at the moment.  This might change though as she gets older.  The other children have just accepted it in the same way as they accept that one boy has to have a puff of his inhaler before playtime.  It is just who S is.

There is a complete kit in the classroom - a gaudy washbag which has her insulin pen and needles, glucose meter, lancets, box of jelly babies, box of breadsticks and the as yet unused glucagen syringe and glucogel tube.  We have a single bag with us when we go out at home and it helps to be able to grab one thing and go.  Otherwise it was 4 different things to remember.

I wrote out a crib sheet of what to do when, which is laminated and stuck on the classroom wall by her kitbag: if she is in the 3s do this, if in the 2s do that.  I needed that sort of clear instruction in the beginning and the staff have said how much they appreciate it.  

Within a remarkably short time they were beginning to say things like "she seemed a bit low so we tested her" and making decisions like giving her a couple of mini breadsticks to keep her going until lunch.  They are getting as aware as anyone who is an 'outsider' can be, I think, and I praise them often even if they do let her run a bit higher than I would at home.  Better that than going low and then over treating a hypo and yo-yoing for the rest of the day.

We have an old exercise book in which I write her lunchtime dose.  This travels to and from school in her book bag.  During the day the staff write her glucose levels and exactly what she had to eat.  I then transfer this information at the end of the day.  She is always injected in the same place (Left Leg Lunch) so they don't have to think about that.

My advice to you is therefore to write the school very clear instructions about what to do at what time.  Accept that school staff are not going to be able to provide the same finely tuned level of care as you are, mainly because as parents we are really good at noticing slight differences in behaviour and so on, and because we are thinking about sugar levels all the time.  School staff are not.  Maybe we have to be satisfied with 'good enough' care for those 6 or 7 hours a day.  So long as our children are within reasonable limits (I have said 4 and 15, as her doses are so small that I am loth to allow anyone else give a 0.5 correction dose as she will then in all likelihood go really low) during the school day we can be tighter the rest of the time.

This is what is working for us.  I hope it helps!

Mary


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## Northerner (May 2, 2010)

Thank you for that Mary, I'm sure a lot of parents will find it very helpful - welcome to the forum!


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## Tors (May 3, 2010)

Thank you all so much for your replies which all have good ideas and your personal experiences are very helpfulxxxxxxxxxx


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## bev (May 3, 2010)

Heidi said:


> Welcome to the forum!
> 
> My son Ross is 12 and diagnosed with Type 1 about five weeks ago. He went back to school two weeks ago - once the Easter holiday was over. There are lots of opinions about this - some people send their children back as soon as they're out of hospital. We didn't do this mainly because there was only half a week left until the Easter holidays. I think even if the holidays had been close I would probably have kept him off a little longer anyway because both he and I (and his twin brother and my OH) all needed time to get our heads around diabetes. More for me, I needed to accept that he isn't made of glass - although I haven't yet come to terms with that to be honest!
> 
> ...



Hi Heidi,
(sorry to hijack this thread but I felt the urge to comment). R should NOT be walking when he is hypo - this is dangerous. If he was in the 2's - and he started walking - he will very quickly drop to the 1's - there is absolutely no reason why he shouldnt be allowed to have his test kit with him at all times wherever he goes in the school. If fact, you should insist on it. Have school given you a reason why he isnt allowed to have it with him? This is really bad and needs sorting out in my opinion.
If R's levels are high - it can also be very dangerous to make him run up and down the stairs. If he doesnt have enough insulin on board and he is high - then any exercise will make him even higher! If he were to have ketones and be made to run up and down the stairs - I dread to think what could happen. 'Sometimes' - it is the right thing to do - but this is very early days for R and you all need time to learn how his body will react when levels are high. I realised very quickly with Alex that taking him swimming when 14mmols wasnt a good idea if he didnt have enough bolus in him - he came out 30mmols - twice! School need to understand this and also know how to correct him with insulin if he is high. Also, if they do correct him - it isnt a good idea to then make him exercise for at least half an hour or the insulin will be absorbed very quickly and he will drop like a stone.

The comment you mentioned about the 'epi pens' - I am flabbergasted to be honest! What on earth was the teacher thinking? Does she know he is diabetic? Why did she make him wait? Things could have got out of hand very quickly because of this stupidity. I hope someone has spoken to this teacher?Bev


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## gewatts (May 3, 2010)

Sorry to deviate from the thread but I just noticed that Heidi said that they make him run up and down the stairs if he's high. We were initially advised that exercise was best if Katie was high but since then I've discovered that it's dangerous to exercise when high - don't ask me to explain why - I can never remember everything! Just thought I'd mention it.


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## Heidi (May 4, 2010)

We've had further developments at school just today...

The SENCO has finally returned to school and spoken to Ross. The rules that were set up temporarily with Ross have pretty much all been removed. From now on he will have his testing equipment with him at all times. He will be allowed to eat in class if necessary and presumably the added exercise will be removed too. 
In the school's defence I wasn't aware of the risk of going higher with exercise - if I'd known when he returned then I'd have advised against it. When he was a little high last week (a reading of 12 before lunch) they telephoned me straight away and asked what they should do - I told them to let him inject and have lunch. 

The SENCO also told Ross he shouldn't have been in school without a care plan - the DSN was happy for him to be in and he needed to go back - the care plan has been missing because she was away! Anyway, now the DSN can go in, I've been invited back and Ross is far happier. 

I realise though that we've been lucky Ross hasn't had any extreme highs or lows so far. As to the stupid teaching assistant that made the remark about the epi pen - I've passed it on to the DSN and I'll be bringing up at the meeting. 

H


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## Patricia (May 4, 2010)

Heidi, you go girl. Well done for hanging with this and getting it sorted. It's a minefield.

It took us several months to click with not exercising when high, as in 14+. There is a caveat to this though: I believe I'm right in saying that if there is more insulin present (eg a correction given), then exercise can work. The real danger is if there is no insulin present, then exercise can cause the BG to rise higher and higher. The body needs insulin to metabolise glucose out of the bloodstream, otherwise everything escalates...

We experienced this caveat directly recently: E was 17 mmols before a planned walk. We gave a correction, then set off on the walk. 20 minutes in and he was 6 mmols. This was entirely due to him having insulin. He had actually forgotten to bolus part of his breakfast, so there was no way that any leftover breakfast bolus was doing the job. It was 'un-accounted-for' glucose in the bloodstream. But once we attended to it, he came down pronto.

I'm very relieved that Ross will now have his kit with him. I was fearful for you. Physically yes it's vital -- but also mentally. This needs to blend in with his life as much as possible, not make him stand out. There's enough of that already in the world...

Hang in...


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## Tors (May 5, 2010)

Heidi, I am finally going into school today to meet with my sons teachers discuss the care he needs, I think they are more interested with the SATS at the moment though as he also has learning difficulties and is 2 years behind THEIR  expected grades!? I get a feeling it would be better for them if he went back after the SATS, but we will see!!! x


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## Heidi (May 5, 2010)

Hope the visit to school went well, Tors. Is it possible that some of his learning difficulties might have been caused by diabetes? Lack of concentration and some behavioural problems can be attributed to it over the short term before diagnosis. For Ross we'd noticed that since starting senior school in September he hasn't thrived in the same way as his twin brother. This was all evident when we went to the parents' evening about two months ago before Ross's diagnosis. His brother got rave reviews from teachers (so much so I wondered if they'd got the right boy ). We had noticed also that in the mornings Ross was always in a foul mood - we put it down to tiredness from the longer school day, hormones, settling in, the weather, anything in fact. 

Now he's almost a different child - he's virtually back to being the same boy he was at primary school. 

And oddly enough even when both boys were toddlers and small children I always avoided sugary foods for Ross because he reacted badly to them - he's very talkative as it is and anything approaching an E number or lots of sugar just made him unbearable. With his brother sugary foods have never had this sort of effect. 
It does make you wonder....

H
x


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## Tors (May 7, 2010)

Heidi, Son went to school today (Friday) meant to go yesterday but was unwell with stomach cramps and raging headache levels quite high not sure if that has anything to do with feeling unwell??? I do think that his learning at school will be easier for him as his concentration seems much better and more alert and as you say less moody I dont think its the whole answer but will help a great deal.Teachers said not to worry about SATS which start on Monday, I dont think my son will do anyway! Went to our first clinic yesterday Dr said he was caught early but is going into honeymoon period???does this mean his levels go low????xxx


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## Kei (May 7, 2010)

As far as I can tell, the honeymoon period just seems to mean that they randomly produce their own insulin.  J kept producing LOADS at night but not much in the day, so he would be OK-ish to high in the day, then very low during the night.  :-(  I hope it's less dramatic for your son.

I hope today goes really well and gives him (and you!) some confidence. 

xx


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## Tors (May 7, 2010)

Thanks I feel a little less confused about "honeymoon period" have had no phone calls from school as yet but am sitting on the phone!!!!!!X


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## Patricia (May 7, 2010)

Hi Tors

Forgot whether you have the Ragnar Hanas book? This will help with SO MUCH explanation.

Also, in answer to the headache/stomach ache thing: yes. When running high, my son always has stomach aches and frequently has headaches. At the beginning, soon after diagnosis, he continued to have these. Not so much now as he's not so high so often...

Hope today was okay. Keep in touch.

Best.


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## Tors (May 7, 2010)

Hi i dont have the book but will certainly have a look for it, anything helps.  When son was first diagnosed only 2-weeks ago I could not look or read anything to do with diabetes (husband did) but think I am ready to now. My husband suggested to come onto this site which so far has been helpful easy and not too scary!! still no phone calls from schoolxx


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## Kei (May 7, 2010)

I think I missed this bit.  F has headaches and tummyaches when she's very high OR low!  I agree with the Ragnar Hanas book.  Several times it has reassured me about things like that.  It's very clear and easy to read.



Patricia said:


> Hi Tors
> 
> Forgot whether you have the Ragnar Hanas book? This will help with SO MUCH explanation.
> 
> ...


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## Tors (May 7, 2010)

Hi son back from school in one piece!! Had a low at school which he (and teacher) dealt with 
no problem.Feel much happier about him going now..Phew He enjoyed showing his class how he checks his blood and injects himself .....strange boy xx


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## Kei (May 7, 2010)

That's great news!

F loves showing her friends how she does her tests.    Kids are odd.


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