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Stressed mum who feels very let down

Karmamel

Member
Messages
16
Location
Whitstable
Type of diabetes
Type 1
Treatment type
Insulin
Hi all

This is my first post so will give you a bit of history. My daughter meg was diagnosed 12 January 2012 type 1 she is 12 years old.

Megan has had high readings since August (mostly between 14 and 26) her diabetic team has dealt with this by increasing her insulin on a weekly basis. She is currently on 17 17 17 novarapid and 31 nightly levemir. The increases never made a difference to readings. The diabetic team then questioned if meg was always having her insulin. I was confident that she was having breakfast tea and bedtime but lunch time I couldn't be sure as she did this on her own at school. So to determine she was having it I asked for school to supervise this.

Megan's blood readings continued to remain high and the clinic decided they would fit a probe next month.

The issues started at her most recent clinic appointment with her diabetic nurse. On entering the room I was questioned who the other child I had with me was to which I replied my youngest daughter the nurse replied 'she doesn't live with you tho does she ' the nurse had visited my home once and youngest was at school I felt this was quite an unprofessional remark and it hurt me ( maybe I'm being to sensitive) I was then told by this nurse that they had received an alarming call from Megan's school stating that Megan hadn't been attending lunch time insulin checks . Obviously I new nothing about this and was shocked that 1. She hadn't been going 2. I hadn't been told. I questioned who she had spoken to how long Megan hadn't been attending and was told for some time.

I was very upset and felt quite cross with Megan . The nurse asked Megan why and although sympathetic came to the conclusion Megan was embarrassed with her diabetes . This is not the case at all and after speaking to meg myself was told it was simply just an unconvenience to her.

I've contacted Megan's school on a number of occasions to speak to the senco left messages but my calls haven't been returned which I'm disgusted about i have spoken to the receptionist ( who was the person checking my daughter had her insulin who informed me meg hadnt come 10 times and that she had passed this information on to the senco i explained i knew nothing about this and expressed concern thathow this can not just affect megans health but also her concentration therefore her school work will suffer and can not understand. The senco however did find the time to take my daughter out of her form room and tell her she has to come lunch times as your mum is blaming your high readings on the school !!!! I can not get my head around any of this and feel I have been let down by so many professionals .

Anyone offer any advice
 
only a quick reply at the mo...but i was in the same situation.......you need to ask for a meeting with diabetic nurse pastrol care the medical room assistant and senco. it might be easier to ask for a caf assessment......we have half termly meeting as school as jane won.t do insulin there and other things...will catch up later.......xx
 
Sounds horrendous! Poor you. I don't think you're being too sensitive, I would be hurt/mad too. I would want some SERIOUS answers from the school PDQ, especially the SENCO. I'm not sure what the DSN was getting at re. your other child, hopefully/probably just an innocent (though unfortunately phrased) comment, rather than anything more sinister.
Im a parent of a type 1 child myself, but my little girl is only 8, so I am luckily in complete control. Scares me to think this might change during the terrible teens. I don't know how to advise you, other than stating the obvious: communication from school needs to be better! Re. the high readings, I hope the probe (CGM?) will reveal some answers. The skipping of the lunchtime insulin can't have helped though.
Hug from me
 
Hi and thanks for replies yes probe is a cgm . She has to have it in for 3 days in hospital and 3 days at home. I definately will be making an appointment to speak to senco next week if the woman eventually takes my call:-/ . I really can't understand where the break down in communication has happened but to be honest there was always a bit of hostility from school when meg was first diagnosed and initial meeting took place where I asked for her to be supported the senco was quite stand offish to who would be supervising this. It was only when the nurse insisted it was their responsibilty to support meg that they agreed and deviced a care plan. As time went on meg it was agreed between myself meg and diabetic team that she could inject at school without supervision but then the senco objected stating that Megan would have to come to medical room or use a toilet as to not upset other children with potential needle fears . I insisted this was unfair on Megan and it was agreed she would inject in form room. I think this bothered them and possibly why they are now being difficult .

After reading other posts on here I realise Megan isn't an isolated case and that other parents are going through same daily struggles with children not complying . This is a shock to me as my diabetic team tell me constantly that meg is the only child that after a year that they are having these issues with and only child with high readings ! As a parent I felt so responsible as I am her mum and should be able to get her levels down but like many this is so hard as she may not of been giving insulin at lunch times . I know she definately sneaks treats without insulin although I've told her constantly she can have treats but must have insulin to match the carbs .
I honestly feel the diabetic team think I'm this mean mum for being cross with her for lying about things as they think this is because she is hiding her diabetes from school friends due to embarrassment but this simply isn't the case I know my daughter and I know it's because it simply gets in the way and quite frankly she can't be bothered. Although she is a bright girl she is just not mature enough to realise how her hypers are affecting her and the long term damage she is doing .

I do think this is an age thing and surely with the right support we will all get over this blip . Unfortunately for many this support doesn't seem to be there and thinks seem to have to get serious before anything is done . For me I find all the while megs readings where 8 and below her team are brilliant but now she is running so high they seem to be finger pointing . I'm just glad I've stubbled across this forum and can speak to normal people dealing with same hurdles x
 
"My daughter meg was diagnosed 12 January 2012 type 1 she is 12 years old."

Hi Karmamel

I'm sure that when people ask when your daughter was diagnosed you will never forget age 12, 12 Jan, 2012. I always remember it was the Millenium January 13th 2000 when James was diagnosed just before his 3rd birthday in April , then he started his primary school the next day. I can't begin to tell you how stressed, anxious and all the other feelings we Mum's have when they first start school as well as him coping with his Diabetes. I really feel for you as it cannot be easy coping as a teenager unlike James who has grown up with it.

Surely Meg's school have had diabetic pupils prior to her and would have a provision put in place. I know when James started his secondary school our DSN and myself had a meeting with the Medical Person there where we kept a box with everything he needed in her cupboard and arrangements were put in place for him to leave his lesson 10 minutes before the end so that he could go to the medical room to do his insulin whilst the medical person is there and she records his BG's. There were three other older pupils who after a year left and he up until the present influx of pupils was the only one. He also was the only one with coeliacs as well, but there is now two other diabetics and one coeliac.

I am sure you will get things sorted and Meg will be in a routine in school before long.

Best Wishes

Yvonne :thumbup:

p.s. Thought that I would add that it has not been easy for us along the way but things do work themselves out so chin up and you will get a lot of advice and information on this forum which has been a massive help to us.
 
Hi Karmamel.

Megan's age at 12 - she is pre-teen and will have lots going on both
in her feelings and thoughts ...
Hormones and genetic changing and body developments fluctuating daily.
Making her probably not know herself somedays the hows or whys she feels like she does :crazy:

With teens they have a natural vein to want to be the same as their peers etc.
Rebellion and noncompliance is the norm behavioural stance and temperment .
Hence the embarrassment and sometimes sneaky things are done to try to hide it.

Youngsters and teenagers can be slower to adapt to the confinements of their diabetes .
They can and do resent it - and have little time for it too .

As a suggestion - try goal set rewards - things she really would love .
Like a new cd or favourite dvd or new book / fashion thing / saturday treat etc...
For taking more responsibility of her diabetes regime.
Try and hide the fact its about being more responsible but more about
mum's approval [huge hugs - if she does it] and treat/reward response ?
If she hears its about being more responsible and is expected to be more grown up
than she is actually ready for .
This can have the opposite reaction - wont be positive/productive either way!

Its a hard one I realise - often 'reverse psychology' does "works" with teenagers .
This is why I am posting this one on to you .

I feel for you as its all so full on for you currently.
It is still only a year since things changed for you all in a huge way.
No wonder you feel stressed and in a whirl , with events going wonky
at her time in school.

We are here for you as support - just keep asking the questions you feel/need to :thumbup:

Anna.
 
oh the injecting in toilets is a no no go!!!! unless staff want to eat lunch there too
we.ve had to resort to bd insulin as jane wouldn.t inject at school....just too busy or forgets...at her school there are about 8 diabetic girls...all have to inject in the medical room which is sometimes busy...lately not allowed to carry pens and needles around as might hurt someone and of course only test in medical room ..if open...as other girls may be needle phobic!!!!!
aren.t we trying to make our kids responsible and independent with their diabetes?????? it took me ages to get jane to carry her insulin and kit around so she will be continuing....all duabetics should be able to test and inject anywhere with some discression....never mind someone might faint at the sight of blood or needle...my child could die!!!!

all schools have muffti day for this and that charity and pay a pound for doing so....im asking janes school to support world diabetes day..nov 14th and have muffti day for a pound.....i hope you all may try and do this too..we need to raise awareness of what our kids need to do every day for the rest of their lives..may be then jane won.t get called a druggie so often xx
 
Hi all .

Thank you so much for your replies and advice.

With regards to other diabetic children in megs school there are 2 older boys brothers infact both on pumps .I think school always struggle With meg injecting at school as nothing had been put in place for this or if it had the senco really didn't seem to have a clue as has struggled with it all.

I still haven't managed to speak to senco despite calling on a daily basis I've asked to make an appointment with her but apparently have to speak to her to do this . I'm sure she is avoiding me . Megan however is now attending the medical room at lunch times to administer insulin and this is over looked by the school receptionist.

I've spoken to her diabetic nurse today who has altered her levemir so she is now on 33 units. Also reduced breakfast novarapid from 17 to 15 as meg is having hypos just before lunch . Nurse also said school had emailed her reiterating concerns when I asked what these were she said the same as what was discussed in clinic which was Megan not turning up for insulin check. This annoyed me to be honest as I feel school and diabetic team are discussing things between themselves and school aren't with me I still can't work out why this is.

Megan's bg seem to be coming down nicely I wonder if this is due to changing her site from tummy to legs recently as tummy was looking slightly lumpy ?

Megan still seems to have the odd high usually before tea that I can not explain.

I really can not wait to get to the bottom of all this as this has been such a roller coaster last few weeks.

Also has anyone else's child had a probe fitted . I was told this was the last resort treatment . ?

X


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just a little note...don.t expect perfection from your daughter....wait for pmt and periods and teenage hormones.......i used to feel caught between the school and jane......her attendance went down to 68% as she was hi so much of the time.....its their diabetes and they have to decide what they want to do as its our job to get our kids independent..i.ve spent many anevening crying but i suppose she will come to accept it one day xxx
 
Stumbled across your post and I'm frankly gobsmacked at the school. I've no idea how the SENCO relates to the school (ie employed by them) but I'd go above her/his head. Send a final email setting out the facts, that there is a breakdown in communications and that this is impacting your daughters health. Stick some dates and facts in about when you have not been told about your daughter missing her insulin. Then say you need to meet urgently and if you don't hear from her you will assime that this is not withon her authority to deal with and that you will need to find a higher authority to raise it with. Give it a few days then write to the Chair of Governors, Ofstead, the Head Teacher... and ask for assistance rectifying the situation.

Having argued with schools on other stuff, I'd advise staying V calm and keep focussed on what you want them to do in the end rather than focussing on the stuff they have done badly.

Very best of luck, I'll be keeping fingers crossed that you find a solution.
 
Hi all

My daughter had the probe fitted this week and things have been going really well . Her levels are brilliant now fingers crossed they stay that way!

I received the routine letter from hospital today and wrote on letter in pen it says bloods normal apart cholesterol 6-2 (2-5) I'm assuming there are concerns with her cholesterol levels and the 2-5 is the normal range ?

I am really worried about this and can't understand how she can have high cholesterol at the age of 12 ! Any ideas on what I should be doing for her ?


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