my daughter is 12 and was diagnosed 7 weeks ago as type 1. we were rushed to hospital,told we could go home when she could inject herself and told that the diabetic nurses were at the end of the phone and we would get the help and support we needed. since then everything is a daze. the nurses dont answer the phone or visit us anymore. her blood levels are ok,between 5 and 9.She constantly feels sick,the school constantly ring me at work asking me to collect her.I have spoke to the school about her care plan but they ignore because its too much hastle for them. i am emotionally tired and diabetes has took over our lifes.will things be normal again?
Please help.
- Thread starter carla1975
- Start Date
Hi Carla,
We have a special forum area for young people with diabetes and their parents called Diabetes Youth Club. You will find lots of useful information there from other parents. I became T1 later in life, but I'm sure someone will be able to help you. It's bound to feel overwhelming for you at first, but I am sure things will get easier. I will see if I can move your post there to see if anyone is around to respond.
We have a special forum area for young people with diabetes and their parents called Diabetes Youth Club. You will find lots of useful information there from other parents. I became T1 later in life, but I'm sure someone will be able to help you. It's bound to feel overwhelming for you at first, but I am sure things will get easier. I will see if I can move your post there to see if anyone is around to respond.
Hugs, Carla.
Life will be normal again, but a different kind of normal. Have you had any kind of education about how to manage your daughter's diabetes? It sounds as if you must have had something to be getting such good BG readings, or have you done it by instinct?
If the nurses won't (or can't) answer their phones then why not pop down to your GP and say so and ask what the next step should be. There should be a diabetes nurse in your GP practice. She/he probably won't know a great deal about managing the minutiae of it, but will have a great deal more experience than you have right now and should be able to help you straighten out the knots and terrors in your brain.
There are some very good resources that others can point you at on the internet, which will help you work out how to balance carbs and insulin until you can get some solid input from the flesh and blood people in your support team: when you have one. I can't tell you where the education things are on here, but others know.
Diabetes is not the end of the world. It is complex and takes a long time to learn the ins and outs of, but there is lots of help and support in here if you can't find it out there. Don't be afraid to ask as many questions as you like and don't be afraid to ask the ones you think are 'silly questions'. If you don't know the answer then it is not a silly question, it's an answer you need to find out.
Once you have got over the shock a bit and got your head round how it works, life will get to be normal again. As I said, it won't be the same normal, but it will become normal to you, as it has to every one of us in here. And when 'normal' takes a holiday and you have to deal with hypos and hormones then come on in here and we can hold your hand and talk you through it.
Please trust me on this next one: your daughter is not half as scared as you are right now. I know I'm not inside her head, but things like this are always worse for the people watching from the outside than they are for the people they are happening to. I was older when I was diagnosed at 17, but my Mum was infinitely more worried than I ever was. I was annoyed, shocked (but didn't realise that until much later), inconvenienced, lost the chance to follow a couple of careers that had been on my 'would like to try' list and many other things, but I was not scared. It is now 36 years later and I have no complications and still lead an active life full of things to do. Your daughter can too, with your help and education. Incidentally, most of those things on my careers list that I couldn't do then are no longer banned. I'm training to be a driving instructor now, and I wasn't allowed all those years ago.
One last thing, and I expect you will do this without me saying but I'm going to say it anyway. Try to involve your daughter in every little thing you both do to control her diabetes, so she learns to do it herself and does not lose her independence and become reliant on you. She should be taught by her healthcare team, and so should you, but it doesn't always come together perfectly, so you need to share every decision and explain why you think she should have just that much insulin, or eat that particular food, or change how much insulin she has because she fancies going for a run... etc. And then listen to her reasoning too. Not of course, to her denials and wrong stuff, of course, but... Oh heck! I''m getting bogged down here. I hope you get my point: be careful not to let yourself think of her as a three year old again. It is so easy to do when there is such a huge thing to take care of and it's very, very hard to let her make her own decisions and be a grown up.
There are people who go into schools to teach the staff if they have a diabetic pupil to care for. I don't know who organises it, but I'm sure someone in these pages does and can point you in the right direction.
Good luck, keep strong and don't let it scare you too much. It's cool. 8) 8)
Life will be normal again, but a different kind of normal. Have you had any kind of education about how to manage your daughter's diabetes? It sounds as if you must have had something to be getting such good BG readings, or have you done it by instinct?
If the nurses won't (or can't) answer their phones then why not pop down to your GP and say so and ask what the next step should be. There should be a diabetes nurse in your GP practice. She/he probably won't know a great deal about managing the minutiae of it, but will have a great deal more experience than you have right now and should be able to help you straighten out the knots and terrors in your brain.
There are some very good resources that others can point you at on the internet, which will help you work out how to balance carbs and insulin until you can get some solid input from the flesh and blood people in your support team: when you have one. I can't tell you where the education things are on here, but others know.
Diabetes is not the end of the world. It is complex and takes a long time to learn the ins and outs of, but there is lots of help and support in here if you can't find it out there. Don't be afraid to ask as many questions as you like and don't be afraid to ask the ones you think are 'silly questions'. If you don't know the answer then it is not a silly question, it's an answer you need to find out.
Once you have got over the shock a bit and got your head round how it works, life will get to be normal again. As I said, it won't be the same normal, but it will become normal to you, as it has to every one of us in here. And when 'normal' takes a holiday and you have to deal with hypos and hormones then come on in here and we can hold your hand and talk you through it.
Please trust me on this next one: your daughter is not half as scared as you are right now. I know I'm not inside her head, but things like this are always worse for the people watching from the outside than they are for the people they are happening to. I was older when I was diagnosed at 17, but my Mum was infinitely more worried than I ever was. I was annoyed, shocked (but didn't realise that until much later), inconvenienced, lost the chance to follow a couple of careers that had been on my 'would like to try' list and many other things, but I was not scared. It is now 36 years later and I have no complications and still lead an active life full of things to do. Your daughter can too, with your help and education. Incidentally, most of those things on my careers list that I couldn't do then are no longer banned. I'm training to be a driving instructor now, and I wasn't allowed all those years ago.
One last thing, and I expect you will do this without me saying but I'm going to say it anyway. Try to involve your daughter in every little thing you both do to control her diabetes, so she learns to do it herself and does not lose her independence and become reliant on you. She should be taught by her healthcare team, and so should you, but it doesn't always come together perfectly, so you need to share every decision and explain why you think she should have just that much insulin, or eat that particular food, or change how much insulin she has because she fancies going for a run... etc. And then listen to her reasoning too. Not of course, to her denials and wrong stuff, of course, but... Oh heck! I''m getting bogged down here. I hope you get my point: be careful not to let yourself think of her as a three year old again. It is so easy to do when there is such a huge thing to take care of and it's very, very hard to let her make her own decisions and be a grown up.
There are people who go into schools to teach the staff if they have a diabetic pupil to care for. I don't know who organises it, but I'm sure someone in these pages does and can point you in the right direction.
Good luck, keep strong and don't let it scare you too much. It's cool. 8) 8)
My son has been T1 for 4 years and it does become part of life. For a 12 year old the diagnosis is pretty terrible and I imagine the sick feelings are worry. I did just meet a local girl about the age of your child and everything seemed fine at home doing the finger pricks and injections. The thought of going back to school filled the child with dread and she really broke down. Facing the peers at school and being worried about being 'found out' or called names is hard to cope with. Even if nothing happens at school the thought of something happening is still there. Diabetes is often underestimated by anyone not dealing with it day to day and sometimes you need to be a little rude to get your message across to the school.
You can also get in touch with JDRF who can sometimes put you in contact with another family not too far away. They also have some great info on their web site. You should also be able to get access to a psychologist at your clinic to help.
Diabetes does take over for a little while but later on you can find ways for it to work in with your family and not the other way around (with a few exceptions). You seem to have good levels so you must be doing a great job without needing to contact the nurse anyway. The parents on here can help with lots of the little questions you might have or tips on how to make life a little easier for everyone.
You can also get in touch with JDRF who can sometimes put you in contact with another family not too far away. They also have some great info on their web site. You should also be able to get access to a psychologist at your clinic to help.
Diabetes does take over for a little while but later on you can find ways for it to work in with your family and not the other way around (with a few exceptions). You seem to have good levels so you must be doing a great job without needing to contact the nurse anyway. The parents on here can help with lots of the little questions you might have or tips on how to make life a little easier for everyone.
thankyou all for your kind replys(im actually crying reading them)laura seems to be coping so well with her diabetes.she can inject herself and knows how to deal with hypo`s and hyper`s,infact she is dealing with it so well im almost waiting for her to break down,throw things around,scream its not fair. I know this seems a terrible thing to say and i feel embarest because i dont have her strengh to cope.I feel as if i hate everything and everyone at the moment,i blame myself that laura has diabetes.we attended the doctors yesterday so ask if there were any local support groups,mainly for me and the doctor just looked blankly at me and said there isnt much i can do.At the moment it feels as if laura is a newborn baby and im fingers and thumbs.Lauras school have been told how to deal with diabetes,there are other children at the school with diabetes. I know laura doesnt get the support from school. laura had a hypo at school and the school nurse would only let her 1 starburst which wasnt enough for her. the school nurse would make laura leave her glucose monitor in her room and when laura went to get it the door would be locked and the nurse couldnt be found.(laura now carries it with her)i have been firm with the school,they rang yesterday whilst i was at work to tell me she was feeling sick(it was a hot day)i asked if she had drunk and checked her levels to which they said no. I get these phonecalls most week days which puts presure on myself at work.We have spoke to dietitions as laura finds it hard to eat breakfast in the mornings,even cereal bars.Meal times are also a struggle. we carb count for her meal then she sometimes cant finish it and then hypos in the evening. in this case is it ok for her to do her insullin after her meal to avoid this. :?
daisy1
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Please don't blame yourself for Laura's diabetes - it's something that's completely out of your control. There's nothing you could have done to give her diabetes. You can just help her by managing it to the best of your ability and teaching her how to do it properly.carla1975 said:
Don't blame yourself. You did nothing wrong and nobody really knows exactly why the immune system turns on itself. This is obviously the biggest problem in finding a cure or prevention.
As for giving insulin after meals - I do this at lunch and dinner every day. I do find Khaleb needs more insulin in the morning so before breakfast is fine for him at that time. If he were in the 4's or 5's in the mornings I might still be inclined to do it after he's eaten. Better safe than sorry is my rule. Khaleb ate pizza for dinner with me tonight so I actually waited about half an hour to give him insulin as the fat slows the absorbtion of the carbs. It has worked out well, so far, as his post dinner was 5.6. You find some foods are different to others and learn to make adjustments by trial and error. I could still be up correcting him in the night as he's got a bit of a cold that just wont leave him alone. (Winter here)
You might be able to get away with a late breakfast or morning tea if your basal levels are fairly spot-on. This would mean that breakfast wouldn't be that important or if she liked a milk drink or smoothie/glass of juice in the morning this would also be good enough as a breakfast. The only other way to be skipping meals is to look at going on a pump but you'd need to check out the pros and cons.
You might find that one day your daughter will need a good cry, throw things around the room and scream. I'm sure you'll be there to catch her if she falls. It isn't easy and diabetes is such a relentless condition. It wont take a day off for birthday's, Christmas or Easter.
Glad that she is keeping her own meter and hypo treatments on her at school. What they don't know wont hurt them and she will be much better off.
As for giving insulin after meals - I do this at lunch and dinner every day. I do find Khaleb needs more insulin in the morning so before breakfast is fine for him at that time. If he were in the 4's or 5's in the mornings I might still be inclined to do it after he's eaten. Better safe than sorry is my rule. Khaleb ate pizza for dinner with me tonight so I actually waited about half an hour to give him insulin as the fat slows the absorbtion of the carbs. It has worked out well, so far, as his post dinner was 5.6. You find some foods are different to others and learn to make adjustments by trial and error. I could still be up correcting him in the night as he's got a bit of a cold that just wont leave him alone. (Winter here)
You might be able to get away with a late breakfast or morning tea if your basal levels are fairly spot-on. This would mean that breakfast wouldn't be that important or if she liked a milk drink or smoothie/glass of juice in the morning this would also be good enough as a breakfast. The only other way to be skipping meals is to look at going on a pump but you'd need to check out the pros and cons.
You might find that one day your daughter will need a good cry, throw things around the room and scream. I'm sure you'll be there to catch her if she falls. It isn't easy and diabetes is such a relentless condition. It wont take a day off for birthday's, Christmas or Easter.
Glad that she is keeping her own meter and hypo treatments on her at school. What they don't know wont hurt them and she will be much better off.
My daughter is 12 now and we are only (only ha!) 18 months since diagnosis. I read your post and it could have been me writing it in January 2010. You will be told continually that it gets easier, and honestly, it does. The learning curve is practically vertical and one that we don't get a choice if we want to learn it or not. We are learning new things constantly. Everytime we go for our clinic appointment, the consultant or diabetes nurse tells me something I didn't know and tells me that they presume they have told me before and I must of had that much to take in, it hadn't registered! (I know for certain they haven't told me!!!)
I do from the outside looking in, appear to be in control, but I look at my 12 year old and I am in awe of her. She is a strong, resilient, capable young lady and I am so very very proud of her. She does get down every now and then about the unfairness of it all, and then picks herself up and dusts herself down and we plod on. She is away this weekend on a residential trip with school (the first time we have ever been apart since she was diagnosed - I went on last year's residential trip and accompanied her, which she wasn't happy with at all but she was hypoing a lot on a twice daily insulin). I feel happy that if something was to go wrong now, she would know what/how to deal with it. She is the only child in the school with Type 1 (900+ pupil intake). So, you too will be in the same place as us in such a short space of time. It's such very early days, I remember it being just a blur.
Stay strong and carry on with what you're doing (your readings are good), and things will start to look brighter x
I do from the outside looking in, appear to be in control, but I look at my 12 year old and I am in awe of her. She is a strong, resilient, capable young lady and I am so very very proud of her. She does get down every now and then about the unfairness of it all, and then picks herself up and dusts herself down and we plod on. She is away this weekend on a residential trip with school (the first time we have ever been apart since she was diagnosed - I went on last year's residential trip and accompanied her, which she wasn't happy with at all but she was hypoing a lot on a twice daily insulin). I feel happy that if something was to go wrong now, she would know what/how to deal with it. She is the only child in the school with Type 1 (900+ pupil intake). So, you too will be in the same place as us in such a short space of time. It's such very early days, I remember it being just a blur.
Stay strong and carry on with what you're doing (your readings are good), and things will start to look brighter x
Hi! I am also in the early days of diagnosis with of my 2 year old. Its been about 3 weeks for him since he was in hospital. I am still feeling the way you are describing, with the guilt and panics, but I take the words of those on here and look to it getting easier in the future. I will have the same school worries when he starts in 2 years, but will cross that bridge when we come to it! So, I dont have any advice as we are new too, but Im thinking of you and hope things improve for you both. We inject after lunch and dinner as well, as my son is a bit temperamental with his eating, so we can manage his dose according to what he has eaten (although its a struggle to inject him as he hates it!).
I hope things keep improving for you
Emma
I hope things keep improving for you
Emma
Hi Carla
My daughter is 11 now, diagnosed 2 years ago.
I can identify with everything you are saying, i am having similar feelings to you now as she was changed from premixed insulin to basal/bolus 6 weeks ago and i feel like i have gone right back to the start with this.
Her levels still haven't settled down, she did have 2 good days and i thought i'd got the doses right but then it went back to being all over the place and it is just so frustrating now!
She appears to cope fairly well with it all but every now and then she will say she hates it, she's fed up and it's not fair etc.
This forum is great, so many people happy to offer advice, help, support
My daughter is 11 now, diagnosed 2 years ago.
I can identify with everything you are saying, i am having similar feelings to you now as she was changed from premixed insulin to basal/bolus 6 weeks ago and i feel like i have gone right back to the start with this.
Her levels still haven't settled down, she did have 2 good days and i thought i'd got the doses right but then it went back to being all over the place and it is just so frustrating now!
She appears to cope fairly well with it all but every now and then she will say she hates it, she's fed up and it's not fair etc.
This forum is great, so many people happy to offer advice, help, support
i never actually realised how supportive this website is,thankyou x.It is so nice to get support from people who are in the same situation instead of people who have no idea and tell you that you just worry too much.Laura broke down in tears last night and told me she is finding it hard.Today she is laughing and messing around with no worries.Its abit difficult as she is at that age where hormones kick in and im dreading when she starts her periods.I am so proud of laura,the way she has took evrything on board and grasped it so quickly,i only wish i was as strong as her.Laura is off to a skiing party next week so hopefully this will give her a little break and time to let her hair down abit.
Tell her to keep her glucose meter in a warmish place as mine will error if it gets too cold. Make sure she takes plenty of snacks as skiing uses heaps of energy and can cause hypos if you aren't prepared. Not trying to scare you but she will need to be mindful. I tend to reduce Khaleb's long acting insulin by 10% for high activity days and he can usually eat what ever he wants. I also do a check in the wee hours of the morning on days that are action packed.
Insulin can sting if it is injected cold so I stick it in my pocket or under my arm for a few minutes in really cold weather before injection.
It will be a challenge managing levels with hormones raging but just so long as she keeps at it things will settle down for future years. Bring on the tears. Better to let it out than bottle it up.
Insulin can sting if it is injected cold so I stick it in my pocket or under my arm for a few minutes in really cold weather before injection.
It will be a challenge managing levels with hormones raging but just so long as she keeps at it things will settle down for future years. Bring on the tears. Better to let it out than bottle it up.
carla,
I think that you should be congratulated, both you and your duaghter. I know it may be hard to believe, but honestly, to have come so far, so quickly, you are doing great! I think it is somethingthat the drs and nurses don't say often enough.
I was diagnosed aged 4, way back when. My parents got involved with the BDA, now Diabetes UK (not this forum, but teh charity) My Dad would go alongto the meetings, and there he met other people with diabetes, and other parents. It was becasue of that, he learnt from experience, that diabetes, whilst a serious thing, did not mean that his 4 year old daughter was doomed to a miserable, unfulfilling life.
I don't know what happens in your area. Have you tried googling your town, or the neighbouring town and the words diabetes support group? You never know.
All the best
I think that you should be congratulated, both you and your duaghter. I know it may be hard to believe, but honestly, to have come so far, so quickly, you are doing great! I think it is somethingthat the drs and nurses don't say often enough.
I was diagnosed aged 4, way back when. My parents got involved with the BDA, now Diabetes UK (not this forum, but teh charity) My Dad would go alongto the meetings, and there he met other people with diabetes, and other parents. It was becasue of that, he learnt from experience, that diabetes, whilst a serious thing, did not mean that his 4 year old daughter was doomed to a miserable, unfulfilling life.
I don't know what happens in your area. Have you tried googling your town, or the neighbouring town and the words diabetes support group? You never know.
All the best
carla1975 said:
Yes that is one of the great things about this website!
I don't think that most people realise what it is like unless they actually have to live with it.
The thing that annoys me the most is when people say to me that they don't know why i am struggling as it is easy :shock:
Funny how they decline my offer to take my child and look after her if it is so easy :lol:
:lol:
That is so funny. Even if I leave Khaleb with my sister for a little while I have to leave her a detailed note of times and what to do (no insulin injections in the time). The last time I did this he had a hypo (not bad) and after looking through the memory I discovered she did not do the test at the time on my note and was quite late. She felt very guilty. She didn't tell me the test was late till I caught her out. I explained that I only checked to know if my instructions should have been changed. No, I didn't give her a hard time as I sometimes lose track of time too.
That is so funny. Even if I leave Khaleb with my sister for a little while I have to leave her a detailed note of times and what to do (no insulin injections in the time). The last time I did this he had a hypo (not bad) and after looking through the memory I discovered she did not do the test at the time on my note and was quite late. She felt very guilty. She didn't tell me the test was late till I caught her out. I explained that I only checked to know if my instructions should have been changed. No, I didn't give her a hard time as I sometimes lose track of time too.
I am 13 and was diagnosed when 12, I was rushed in to hospital with a sugar of 13.7 and hadn't eaten all day! Things with school aren't easy I'll admit, my secondary school wouldn't know what to do if, god forbid- I passed out. I have a lunch pass so I can work out all my carbs for lunch and finish doing my BG before anyone else comes into the canteen. Right now I'm preparing the information packs for my new school year teachers as emails never seem to work. I still can't control my diabetes very well and I hate it, but in the words of my wonderful new consultant- "You don't have love it you just have to make sure it doesn't get in your way by looking after yourself."
Charlotte
Charlotte
Wow, Sweetwii044, you sound so switched on its hard to think you are only 13! I dont mean that in a bad way at all but you really seem to have a good responsibility for your diabetes. I hope my son will also grow up with this positve attitude. I hope school works out well for you,
Emma
Emma
