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3 years ago today...............

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3 years ago today...............

Post  keatingschick on Thu Jul 07, 2011 8:29 pm

.............my daughter was diagnosed. I'd had a real hunch, just a real niggling feeling. Suspected for a long time, though I dont suppose I realised the real implications. She'd come home from school the week before announcing she was REALLY thirsty at school that day. I dont know what but for a child to say that it just rang alarm bells in my head. To stress she was REALLY thirsty and make a point of telling me. She'd been getting up alot in the night to go to the loo and I just KNEW.

I made her an appointment and casually told the teachers I was sure that she was diabetic - maybe it was so obvious to them that I didnt really have a clue what it involved as I seemed to casual.

She was on a long school trip that day, it was a warm day and then went on a long walk through the park - no toilets available and my daughter had an "accident"....apparently several other girls did, but they rang me to go and get her.

We took her to the docs - armed with a water sample - and I told the doc that I was sure she was diabetic. The doc looked at me like he thought I had lost my marbles but listened to me. He said she'd need to do a sample - I handed it to him, he said that IF it was diabetes he'd expect high traces of sugar in the urine, he said there were but still not to assume, it could be anything and said it would be sent to be tested properly and they would be in touch. That night I got a phone call from the hospital saying my daughter had VERY VERY HIGH traces of sugar in her urine and blood and had to see someone. I waited for him to suggest an appointment etc, but he said no she had to see someone NOW. We had to go to the childrens ward, everyone was cagey, just kept asking us had anyone told us anything and none of them wanting to commit to a diagnosis, but then a nice doctor finally sat down and told us...............we were stunned!!!

After that everything was a turmoil.....learning about the diabetes, controlling her levels, testing herself, hypos, and breaking my heart each time I saw my 10 year old girl inject herself Crying or Very sad

Anyway...........it's 3 years now.......doesn't time fly...

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Re: 3 years ago today...............

Post  beaniequeenie on Tue Jul 12, 2011 10:44 am

Oh no,

What a horrid time for you all to go through. I hope things are more settled now. It might take time but your little girl will get used to everything that she has to do.

There are times when my diabetes gets me down, but I have my Mum (OK I'm 26 but I still need mummy) and other family so I go to them for a good cry then feel better and carry on.

I've only been diagnosed for 4 years and it is a steep learning curve. The only thing I can say is please, please, listen to her if she notices things that make her hypo or hyper or whatever.

If you are bored enough to look through my past posts you will see all the problems I have had with nurses etc ignoring me. (Although, I am a difficult case to treat.) I just wish that people had listened to me in the first place. (I'm not saying give in when she says that she needs that huge tub ice cream, but foods/excercise/sress/life effect ppls bg levels differently so it is worth making a note of what she says.)

On the plus side of the whole diabetes thing, I saw an article the other day about an elderly man who is type 1 and has been on insulin since it was first used. (I'm sure he was 80, I will look and see if I can find it again and I'll post it.) Proof that you really can live a good long life with diabetes.
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Re: 3 years ago today...............

Post  keatingschick on Tue Jul 12, 2011 7:56 pm

beaniequeenie wrote:Oh no,

What a horrid time for you all to go through. I hope things are more settled now. It might take time but your little girl will get used to everything that she has to do.

There are times when my diabetes gets me down, but I have my Mum (OK I'm 26 but I still need mummy) and other family so I go to them for a good cry then feel better and carry on.

I've only been diagnosed for 4 years and it is a steep learning curve. The only thing I can say is please, please, listen to her if she notices things that make her hypo or hyper or whatever.

If you are bored enough to look through my past posts you will see all the problems I have had with nurses etc ignoring me. (Although, I am a difficult case to treat.) I just wish that people had listened to me in the first place. (I'm not saying give in when she says that she needs that huge tub ice cream, but foods/excercise/sress/life effect ppls bg levels differently so it is worth making a note of what she says.)

On the plus side of the whole diabetes thing, I saw an article the other day about an elderly man who is type 1 and has been on insulin since it was first used. (I'm sure he was 80, I will look and see if I can find it again and I'll post it.) Proof that you really can live a good long life with diabetes.

Hi Beaniequeenie,

Thankhou for your reply,
It wouldn't be boredom that made me look through your posts!!! It's fantastic to have people to speak to who understand. I get so frustrated at times and I'll hold my hand up and admit ANGRY at times. I don't think anyone truely understands diabetes until they have known someone with it properly, and had to at least help deal with it.

She is very good, she recognises her hypo's, she is very sensible, her worst thing is her love for chocolate and she gives me a hard time over that and I swear she can wish herself hypo when she asks for choc and I refuse.

To be honest the diabetic team have been fantastic and I am sort of nervous when she is no longer under the care of the diabetic team, because although we TOUCH WOOD rarely have contact with them other than when we visit clinic, I like having that support, cos at times it does get quite scary. The only problem we have is that she has an ongoing sickness/nausea problem. She did have it before she was diagnosed and we're unsure what it is, she has missed school because of it, cos sometimes I cant let her inject because she won't eat cos she feels sick, but the school obviously arent impressed with her being off school alot, but the diabetic team say its not diabetes related so not much they can do....THAT has been very frustrating, along with her very UNSYMPATHETIC good friend('s mum), who will say "oh, when she is ill I send her, they'll ring if they need me"...which is fair enough but a) I cant inject her if she is feeling ill and wont eat...b) its a little more worrying sending a child to school feeling ill when they are diabetic...and I do know that cos I have 2 kids and my daughter was 10 when she was diagnosed so I've had many times where I've said "oh, u'll maybe feel better at school but if you arent well the school will ring me".....but with the diabetes its harder.

I think the hardest thing for me is letting someone else be in control. I must be a real control freak, but I feel no one will be as vigilant as me, and so when she is at school, or if she goes on trips etc, I am nervous. She is talking about going to UNI and I am terrified!! I know I have to let go, but she'll always be my little girl and it's a scary thought.

COURSE you want your mum, I still want my mum at times and I am.......older than you

Laughing

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Re: 3 years ago today...............

Post  Clare on Tue Jul 12, 2011 8:17 pm

Me again.....butting in......it's what I do Embarassed

Do you know if there are any other kids at school that are Diabetic? (you probably have said, but I'm having a Lupus day - so if I stop to read your other posts, I'll forget what I was going to say Rolling Eyes )

If there are other kids, it might be worth getting them all together to see if they have concerns - If the kids don't want to then maybe the parents could.
It's just an idea, but you could have the kids/parents watching out for each other. Sometimes kids will mention to other kids that have the same problem something that they may not tell their parents. It's just a way of keeping track.

Doug would never tell me about any "glitches" he had at work (so he wouldn't worry me), so I was kept in the loop by one of his Diabetic colleagues.

I've probably said all this before, so ignore me if I have. You'll get used to my long, waffling posts (I told you we like waffles Wink ), but one of my symptoms is no short-term memory and another is the inability to remember words - my lot love taking the mick when I can't string a sentence together Suspect

Good to see you Beanie - how's it all going?

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Re: 3 years ago today...............

Post  keatingschick on Tue Jul 12, 2011 9:05 pm

Hiya,

There are a couple of other kids at school with diabetes, but I dont think she really bothers with them. Apparently, (and I am not just saying this cos she is my daughter), but she is the most organised at school. The teacher told me this when I had to speak to her about something, she said that a couple of the other diabetic pupils have problems and don't seem to be in control but she said she recognises that my daughter has good control over her diabetes.

The issues she has had at school are that she wont inject. We've spoken to her and the school are willing to do what they can, but she just wont (we wish she would cos she would have better control). At the moment she is still on a mix with breakfast which obviously is running out towards the end of school so she is generally running high when she gets home.

She doesnt want to inject because she has to go off to some room near the staff room and do her injection, I think she doesnt wnat to (and wont be allowed to) inject in the main hall, but by the same token she doesnt like having to have to go off to the staff room, while all her friends are sat chatting and having dinner.

There was a girl who was diagnosed the day after and we met in hospital, her mum and I got friendly as it was a big shock to us both and we'd ring and compare notes, and the girl who is a few years older than my daughter has said she can chat to her anytime which I think would be great as she can share her feelings. But to be honest she doesnt!! Generally she doesnt say alot. She went through a period where she would be rather stressy and emotional and lash out, but maybe that was hormones, at the moment GENERALLY she just gets on with it....its me that struggles lol

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Re: 3 years ago today...............

Post  keatingschick on Tue Jul 12, 2011 9:06 pm

and....p.s. I love your waffling, I'm the same

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Re: 3 years ago today...............

Post  beaniequeenie on Wed Jul 13, 2011 12:17 pm

Hi Claire, I'm good thanks (well I use the term good loosely Laughing ) Waiting for the 4th August when I go to see the specialist at Kings. Other than that just plodding along.

Its been very quiet on here latley. What have you done with Nick? Lol

Keatingschick,

It can take a long time to feel like you are able to talk to other people about how u feel, so dont be too upset if she doesn't want to talk. There are times when I will talk all day about my diabetes (by talk I mean moan) and then other days I wont say a word.

I cant help with the injecting at school thing cos I never had to do it. But... What would she do if she had to inject when you were out? I mean, I have no problem going to the bathrooms and doing it. Other people dont like that, but it's not as if I'm taking the needle out of the toilet!
or, Could she not inject after her meal? Then she can eat with her friends go off for 2 minutes inject and come back? (Yea I know the nurses like you to do it b4 eating but life isnt as basic as it is in the medical books they read)

Also is she happy injecting herself? You said something about you doing the injections. Maybe if she was always doing them herself over time she would feel more confident about doing them quickly and then not so worried that her friends will be off without her?

sorry, finally on that, why does she have to go to the staff room? Talk about making her feel like an outcast! (Like Making it a big secret that no-one else can be part of.) Injections take seconds why can't she do it in the class room once all the kids have left rather than being escorted off somewhere special. Maybe she could have her cloest friends with her then. They will soon get used to it and they would just 'ignore' what she is doing and wait till she is finished. (The same way as they would wait for someone who was talking to a teacher after class etc)

With the sickness, I don't know if it is diabetes or not. (If it's not in the DSNs diabetes handbook they will tell you it isn't anyway.) But I did used to feel really unwell somedays. I put it down to a number of possible things. 1) Who wants to inject them selves? Imagine knowing you needed a jab everyday. No thanks. So it might be nerves. Even though deep down you know it isn't going to hurt, u still dont like it. 2) She is worried about school & injecting/hypos etc. She might not even know thats what it is. These things can play on your mind without you realising it. 3) The pancreas still has to die completly, every once in a while it has a kick and tries to do its job. That makes me feel sick, when that happens I find I need less insulin or I have a hypo. Once the sickness goes I'm back to my normal levels.

Not sure if thats any help at all. Just some thoughts. Try not to stress. She will be fine. Uni is still a little way off, be more worried about the fees than the diabetes! Smile
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Re: 3 years ago today...............

Post  keatingschick on Wed Jul 13, 2011 7:27 pm

Hope I can manage to remember what you've said...or can I scroll down

It's weird cos when she was first diagnosed she never said ANYTHING, she didnt talk about it or complain or ANYTHING, I did!! I ranted like crazy, I got (and still do get) very annoyed at other peoples approach - like her friend who bought Easter eggs, cos it "doesnt seem right not to by Easter Eggs at Easter"...that infuriates me SO MUCH. But my daughter never said anything, but then just one night we were just chatting and she started to spill how she felt, that at times she did feel resentful, and sometimes wished she could have 1 day off, but she also recognises that she felt so ill before she was diagnosed and so I suppose she sees the "silver lining" as her feeling better than she did.


Re: injecting/injecting at school. She does all her own injections and has done since maybe a couple of days after diagnosis, she actually wont let us inject her - you've probably misunderstood when I said that with the sickness I cant inject her, but I mean that I cant sort her a.m injection out if she wont eat, but no she does all her own injections without a backward glance. If we are out she will inject herself discreetly at the table - I dont send her off to the bathroom, I wouldnt expect her to do that. I'm not knocking your choice to do that its where you feel comfy, mine is more an indignant "why should she be sent away to the toilet to inject like a dirty secret", I've never SO FAR had anyone say anything or look when she injects but I have read comments about how people dont like to see diabetics inject and think they SHOULD go to the toilets to do it, and I'd be like a dog with a bone if anyone said that.
I'm not totally sure why she won't inject at school, I THINK its the idea of having to go elsewhere to inject and maybe leaving her friends, the school have offered to work with whatever works for her, letting her out of lesson slightly early, letting her take a friend with her, etc....but she really digs her heels in, I think its really a case of she really doesnt want to have to do something that her friends dont have to do. I dont know No Initially when she started at high school we said for the first year she didnt have to, as she had alot of changes and adjustments then she didnt have to do that, but she is going to be a 3rd year after the summer and she still point blank refuses, even though we have a fab control over her diabetes at weekend cos its just novarapid (basal balus), and so doing that during the week would mean we had excellent control over her diabetes constantly, but she just wont.
As for the staff room - I think its health and safety. Having needles in the dining room or something? I dont really know, but they've offered to work with us and provide a room where she can go, but I always get the impression that she will go elsewhere to inject (probably where the other diabetics go).

Re the sickness - its a weird one. One of the things we have found....well there are a couple of things. One is that she kept getting tonsilitis and the sickness always came then, but we've also found that she is sick on the day we go on holiday and the day we travel back. A few months ago we went to Florida and she started being sick about 2 hours before we landed, she was sick constant for the 2 hours, and then through customs and then got home and slept from 11a.m til 5.pm obviously we couldnt inject or anything and told the docs cos it affected her levels etc. but they still drew a blank. But she has spoken about it recently and she said she agrees with our theory that she is anxious, but its not anxious re the travelling - she doesnt mind flying or anything, what it is is that she has always got travel sick, but now its an anxiety about that. She gets anxious that she is going to feel sick and so its a knock on effect - she in effect makes herself feel sick. So I'm going to have to approach the docs about that,.

Thanks for your reply - its so lovely to speak to someone who understands.

Lorraine x

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Re: 3 years ago today...............

Post  beaniequeenie on Mon Jul 25, 2011 11:51 am

Hi KeatingsChick.

Would your daughter ever consider getting an insulin pump (and before she screams NO! I used to be dead against them until I got one! I couldn't think of anything worse, but now I have it I'm glad I'm not on daily injections!).

I only thought of it because she doesn't want to inject at school. With a pump she would always have it so wouldn't need to ever go off from her friends and she can do her bolus with the press of a button when she is ready (as in not infront of anyone if she chooses.) If you presented the case to her nurse as she 'point blank refuses' to do her injections you will have a better case. (A little exaggeration never hurt).

Might be worth thinking about? BUT If she really doesn't want one then she's gonna have to do the injections Sad . Unfortunatly its not a situation that can afford any messing about (that is probably the hardest lesson, I tried to rebel when I was first diagnosed but soon changed my mind when I started feeling ill again).
I think it must be hard for teenagers, life is pretty unfair at 13 anyway (that's what I thought then!).

Would she not come on here to talk about how she feels? She wouldn't have to tell us who she is but she can always just ask any questions she has or moan or say what ever she likes.
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Re: 3 years ago today...............

Post  keatingschick on Mon Jul 25, 2011 5:23 pm

beaniequeenie wrote:Hi KeatingsChick.

Would your daughter ever consider getting an insulin pump (and before she screams NO! I used to be dead against them until I got one! I couldn't think of anything worse, but now I have it I'm glad I'm not on daily injections!).

I only thought of it because she doesn't want to inject at school. With a pump she would always have it so wouldn't need to ever go off from her friends and she can do her bolus with the press of a button when she is ready (as in not infront of anyone if she chooses.) If you presented the case to her nurse as she 'point blank refuses' to do her injections you will have a better case. (A little exaggeration never hurt).

Might be worth thinking about? BUT If she really doesn't want one then she's gonna have to do the injections Sad . Unfortunatly its not a situation that can afford any messing about (that is probably the hardest lesson, I tried to rebel when I was first diagnosed but soon changed my mind when I started feeling ill again).
I think it must be hard for teenagers, life is pretty unfair at 13 anyway (that's what I thought then!).

Would she not come on here to talk about how she feels? She wouldn't have to tell us who she is but she can always just ask any questions she has or moan or say what ever she likes.

Hiya, to be honest its ME that wouldnt like the idea of a pump. I don't know why but I just really don't fancy it. I'll be honest I don't know alot about it and would find out IF it ever became an option, but my only dealing with it was out one night a girl came talking to me, she knew my daughter was diabetic and she was and she started having a go at me, sort of trying to do it nicely but really having a go at me saying I had to give her some space etc. and let her do her own thing etc. She was TOTALLY wasted and she was saying how her dad worried about her cos she liked a drink and often forgot to check herself or eat etc. She had a pump and she showed it to me, now like I said I dont KNOW alot about it, but the impression she gave me with what she was saying was basically she couldnt be bothered and wasnt taking enough care and so they'd given her the pump as a sort of way to keep hold of her diabetes because she didnt seem to.
We have very good control over her diabetes even though she won't do the injections at school - I think thats why they never push her to consider it. I think that if we had less control then they might start looking at alternative routes, but they've said that we clearly have a very tight control over it and that obviously she has highs but the hb1c reading shows that we must get it back under control as soon as she is high. IF her levels started to become an issue then we'd have to clamp down a little and I think the diabetic team would too, but initially they said for the first year that she could carry on with the mix, but they've let her carry on and she goes into her 3rd year now, and so I think because her levels are so good that they havent pushed her.

I don't know if she'd come on here, I did mention it, but I don't know. She doesnt tend to say alot, though every so often she will have a moan, she has been nagging alot for chocolate lately, but like I said her levels are still very good.

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