Hi. My 6 year old daughter was diagnosed on 20th October after I took her for a urine test at G.P.'s as thought she had an infection! I only expected some antibiotics not a trip straight to hospital and a diagnosis of Type 1. I can manage the day to day stuff, like the carb counting and testing etc, it;s the WHY HER? that I can't deal with. If anyone else tells me to give it a few weeks and it will be ok, I'm likely to tell them were to go!
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Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
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Screening for type 1 diabetes: We now have a new forum section which is for parents who, after having their child screened for type 1, have received a positive result that at some stage their child will be diagnosed with type 1 diabetes. Where possible, please do offer your support and experiences of having a child diagnosed. https://forum.diabetes.org.uk/boards/forums/screening-for-type-1-community-chat.59/
Just diagnosed
- Thread starter NatashaA
- Start date
- Status
Steff
Little Miss Chatterbox
- Relationship to Diabetes
- Type 2
Hi Natasha and a warm welcome to the forum, very sorry to hear of your daughters diagnosis im certainly not going to say give it a few weeks cause us adults get told that and its hard enough never mind a child or the childs parent.Theres a lovely bunch of parents on here who will help whenever wherever they can as well as all of us xx.
Have a good browse around the parents section theres alot of parents been where you are now and will know EXACTLY how you are feeling.
Have you heard of CWD(Children With Diabetes)your put onto a mailing list and theres always great support there to here is the link http://forums.childrenwithdiabetes.com/
Have a good browse around the parents section theres alot of parents been where you are now and will know EXACTLY how you are feeling.
Have you heard of CWD(Children With Diabetes)your put onto a mailing list and theres always great support there to here is the link http://forums.childrenwithdiabetes.com/
Hanmillmum
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
Hi, sorry you have to be here but a very warm welcome too!
It is very hard to accept even further down the line like us. I often wish it could be me that has it and comments from others can be quite unhelpful (and upsetting on my low tolerance days, I'm often biting my tongue!). It can be quite a lonely feeling and it does help finding others that can relate and vent to like here. "Children with Diabetes" is also good support.
How is your daughter coping with it, is she at school ?
It is very hard to accept even further down the line like us. I often wish it could be me that has it and comments from others can be quite unhelpful (and upsetting on my low tolerance days, I'm often biting my tongue!). It can be quite a lonely feeling and it does help finding others that can relate and vent to like here. "Children with Diabetes" is also good support.
How is your daughter coping with it, is she at school ?
Northerner
Admin (Retired)
- Relationship to Diabetes
- Type 1
Hi Natasha, welcome to the forum 🙂 Very sorry to hear about your daughter's diagnosis, I can't imagine how it must feel for you, as a parent. Hopefully, you can take some comfort from the fact that we have many members here who have grown up with diabetes and are leading fulfilling and happy lives, without any problems. Treatments and knowledge are improving all the time, thankfully, but that doesn't mean that it's not a huge thing to have to contemplate and understand.
I would highly recommend getting a copy of Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas. It will explain virtually everything you need to know about living with Type 1, and for the things that aren't covered there then you have us 🙂 You might also like to get a support and information pack for children with a new diagnosis of type 1 diabetes from JDRF (Juvenile Diabetes Research Foundation):
http://www.jdrf.org.uk/page.asp?sect...onTitle=KIDSAC
How is she coping with the injections and tests? Do you have a supportive team to help you through this?
I would highly recommend getting a copy of Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas. It will explain virtually everything you need to know about living with Type 1, and for the things that aren't covered there then you have us 🙂 You might also like to get a support and information pack for children with a new diagnosis of type 1 diabetes from JDRF (Juvenile Diabetes Research Foundation):
http://www.jdrf.org.uk/page.asp?sect...onTitle=KIDSAC
How is she coping with the injections and tests? Do you have a supportive team to help you through this?
trophywench
Well-Known Member
- Relationship to Diabetes
- Type 1
Hi NatashaA
Just {{{Hugs}}}
Have you thought of joining a support group for mums like you? (and of course, dads) - try contacting your local branch of Diabetes UK - many of them have parent/child sections. If not - howzabout starting one?
Just {{{Hugs}}}
Have you thought of joining a support group for mums like you? (and of course, dads) - try contacting your local branch of Diabetes UK - many of them have parent/child sections. If not - howzabout starting one?
Robster65
Senior Member
- Relationship to Diabetes
- Type 1
Hi Natasha. Welcome 🙂
I think it's only natural to feel that way. I'm sure I would. And I know my parents did when I was diagnosed. As has been said, it's hard to dress it up as nothing to worry about but for her at least, it's something she'll adapt to and will become the norm. It sounds a good idea to find other parents to speak to. We have many on here and maybe you could meet up with a couple.
I hope you get plenty from our forum and we'll try to help where we can.🙂
Rob
I think it's only natural to feel that way. I'm sure I would. And I know my parents did when I was diagnosed. As has been said, it's hard to dress it up as nothing to worry about but for her at least, it's something she'll adapt to and will become the norm. It sounds a good idea to find other parents to speak to. We have many on here and maybe you could meet up with a couple.
I hope you get plenty from our forum and we'll try to help where we can.🙂
Rob
MCH
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Hi there. Sorry to hear your news about your daughter.
I was diagnosed at 9 and at the time my mum said I was just happy feeling better than I had for a while.
Thinking back though, I think my mum felt worse (as you seem to be doing) than I did. I think one advantage of being diagnosed young is that it just became a way of life and just normal life to.
I was diagnosed at 9 and at the time my mum said I was just happy feeling better than I had for a while.
Thinking back though, I think my mum felt worse (as you seem to be doing) than I did. I think one advantage of being diagnosed young is that it just became a way of life and just normal life to.
grahams mum
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
Everybody In The Same Situation Said Why Me Yes We Umlucky Give Yourself A Few Months Before Make Sense Of What Happened We Are All Here To Help Each Other !!
Adrienne
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
Hey Natasha
Sorry only just seen this, I tend to come and go on here as I am on the Children with diabetes mailing group more.
I'm so sorry to hear about your little daughter. It is a bloody nightmare isn't it. I just hate it whenever I hear of yet another diagnosis it just makes me mad.
You will be living in your 'diabetes bubble' for a few months yet where your whole life will revolve around this diagnosis and lots and lots of 'why me's' and 'why her's' and stuff like that. What some people have likened it to is actually mourning the loss of your healthy child. Whilst some of the adults on here with type 1 may think that is extreme, it is how us as parents feel. It is a very different type of emotion being a parent of a child with type 1 than actually having type 1 yourself.
I get a lot from hearing the guys on there with type 1 and just reading their posts give hope for the future.
So much has changed in the world of diabetes over the years and technology is evolving.
There is a poem I would love you to read. I read this and still do over and over again and it just applies to me and all my friends in the diabetes world.
It was written by a parent of a child with autism but it can be for any medical conditions.
This is the poem or story :
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I love Holland. Diabetes is horrid but, and here are those dreaded words you don't want to hear, it gets easier. I'll be honest and say that diabetes doesn't get easier but once you are out of your diabetes bubble, your knowledge will grow and grow and it is that knowledge that makes it easier. Rather than the diabetes controlling you or your daughter, soon very soon you will be controlling the diabetes. It will throw you the odd curve ball sometimes more that once at a time but your knowledge and your experience will carry you though.
I didn't want to go to Holland at all, I wanted to stay in Italy with my friends. I can tell you that my daughter having diabetes changed my life but it brought with it huge bonus'. I won't deny I would rather she didn't have it but she does and because of that my life took a different path, I have the best friends in the world who all have children with diabetes and I couldn't imagine my life without them.
Just take a day at a time Natasha, just one day at a time. You will get out the other end of the bubble and somehow and one day you will get to that point where you are in control and will be feeling very differently to how you are now which is bloomin' angry and frustrated etc etc. We've all been there and 100% get it.
Take care and ask anything at all or just rant at us. 🙂
Sorry only just seen this, I tend to come and go on here as I am on the Children with diabetes mailing group more.
I'm so sorry to hear about your little daughter. It is a bloody nightmare isn't it. I just hate it whenever I hear of yet another diagnosis it just makes me mad.
You will be living in your 'diabetes bubble' for a few months yet where your whole life will revolve around this diagnosis and lots and lots of 'why me's' and 'why her's' and stuff like that. What some people have likened it to is actually mourning the loss of your healthy child. Whilst some of the adults on here with type 1 may think that is extreme, it is how us as parents feel. It is a very different type of emotion being a parent of a child with type 1 than actually having type 1 yourself.
I get a lot from hearing the guys on there with type 1 and just reading their posts give hope for the future.
So much has changed in the world of diabetes over the years and technology is evolving.
There is a poem I would love you to read. I read this and still do over and over again and it just applies to me and all my friends in the diabetes world.
It was written by a parent of a child with autism but it can be for any medical conditions.
This is the poem or story :
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I love Holland. Diabetes is horrid but, and here are those dreaded words you don't want to hear, it gets easier. I'll be honest and say that diabetes doesn't get easier but once you are out of your diabetes bubble, your knowledge will grow and grow and it is that knowledge that makes it easier. Rather than the diabetes controlling you or your daughter, soon very soon you will be controlling the diabetes. It will throw you the odd curve ball sometimes more that once at a time but your knowledge and your experience will carry you though.
I didn't want to go to Holland at all, I wanted to stay in Italy with my friends. I can tell you that my daughter having diabetes changed my life but it brought with it huge bonus'. I won't deny I would rather she didn't have it but she does and because of that my life took a different path, I have the best friends in the world who all have children with diabetes and I couldn't imagine my life without them.
Just take a day at a time Natasha, just one day at a time. You will get out the other end of the bubble and somehow and one day you will get to that point where you are in control and will be feeling very differently to how you are now which is bloomin' angry and frustrated etc etc. We've all been there and 100% get it.
Take care and ask anything at all or just rant at us. 🙂
ruthelliot
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
Hi Natasha,
As the others have said the way you feel is absolutely normal. My son was diagnosed 3yrs ago yesterday and it was just when I read your post that I realised the. "why me" feeling has finally drifted into the background ( though still rears its head at the odd 2am hypo!) Adrienne is spot on - I still mourn a bit for the loss of the healthy care free chid I had but in his place I have an exceptionally brave accepting little boy who is growing up healthy and happy and with a bright future. I'm sure the diagnosis has led to a few extra grey hairs and worry lines for me and while I don't believe it will ever be easy to live with it is so much easier than those early months and the support of others walking in the same shoes is invaluable.
Ruth x
As the others have said the way you feel is absolutely normal. My son was diagnosed 3yrs ago yesterday and it was just when I read your post that I realised the. "why me" feeling has finally drifted into the background ( though still rears its head at the odd 2am hypo!) Adrienne is spot on - I still mourn a bit for the loss of the healthy care free chid I had but in his place I have an exceptionally brave accepting little boy who is growing up healthy and happy and with a bright future. I'm sure the diagnosis has led to a few extra grey hairs and worry lines for me and while I don't believe it will ever be easy to live with it is so much easier than those early months and the support of others walking in the same shoes is invaluable.
Ruth x
grahams mum
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
hi adrienne i really like the poem and is so true and even now with my new baby i say to all the other new mum because you have a healthy baby at birth does not mean that it will stay healthy all his /her life but we have to get on with it for our children future
elaine1969
Active Member
- Relationship to Diabetes
- Parent of person with diabetes
Hi Natasha, I am new to this website but 1 year plus down the line from my daughters diagnosis. At the time I badly wanted to speak to people and gain as much information as possible for some reason I have only just discovered this site!!
It is a terrible life changing experience and it takes some time to come to terms with the diagnosis ( I still have days where I struggle) but it really does get easier with time. I am sure there will be testing times ahead but hang in there, you will reach the point where whilst diabetes is always there, it remains more in the background and you can start to get back to normal family life. Good luck.
It is a terrible life changing experience and it takes some time to come to terms with the diagnosis ( I still have days where I struggle) but it really does get easier with time. I am sure there will be testing times ahead but hang in there, you will reach the point where whilst diabetes is always there, it remains more in the background and you can start to get back to normal family life. Good luck.
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Thanks to you all for your comments. I managed not to cry for two days but just reading your stories, made me have a little weep (but only a little!). I think that in a way I am mourning, for I look at my beautiful daughter and wish I could turn the clock back and have my 'normal' child back again. I watch her play with her toys, chat to her friends and talk the hind legs off a donkey and for a few short minutes, I have my Abigail back. Then I look at the time and its blood testing and snack again and the world of diabetes takes over.
Best wishes
No one ever did say to me "give it a few weeks and it will be ok". If they had I would have shrieked at them - mostly swear words. You're right to see it as a big deal. It is a big deal. Diabetes is not easy, either for you or for her.
One big plus - though it won't seem like it now - is having a 6 year old with diabetes rather than a newly diagnosed teenager. She will grow up with diabetes and cope very much better because she won't know any different. When my child was diagnosed aged 7 a woman I hardly knew came to tell me that she'd become diabetic at 17 and spent the next few years in ambulances. She was so angry at the diagnosis that she refused to co-operate, and did herself permanent damage. You can help your little girl as you learn, and although this may seem a fairly weak plus, it is a plus.
The other thing to bear in mind is the progress that's being made. Go to the JDRF web site to read encouraging news.
And finally, never forget that only a hundred years ago your child would be dying. Insulin was discovered less than a century ago. Before that time kids with Type 1 just faded away. It's worth remembering this when things are tough. They could have been a lot worse.
I wish you all the best.
No one ever did say to me "give it a few weeks and it will be ok". If they had I would have shrieked at them - mostly swear words. You're right to see it as a big deal. It is a big deal. Diabetes is not easy, either for you or for her.
One big plus - though it won't seem like it now - is having a 6 year old with diabetes rather than a newly diagnosed teenager. She will grow up with diabetes and cope very much better because she won't know any different. When my child was diagnosed aged 7 a woman I hardly knew came to tell me that she'd become diabetic at 17 and spent the next few years in ambulances. She was so angry at the diagnosis that she refused to co-operate, and did herself permanent damage. You can help your little girl as you learn, and although this may seem a fairly weak plus, it is a plus.
The other thing to bear in mind is the progress that's being made. Go to the JDRF web site to read encouraging news.
And finally, never forget that only a hundred years ago your child would be dying. Insulin was discovered less than a century ago. Before that time kids with Type 1 just faded away. It's worth remembering this when things are tough. They could have been a lot worse.
I wish you all the best.
trophywench
Well-Known Member
- Relationship to Diabetes
- Type 1
And I'm a complete pillock Natasha
Try clicking this http://www.diabetes-support.org.uk/info/?page_id=50
and the bit I mean is the link in the second paragraph - "The Five Stages of Grief" - of course you are in mourning!
Try clicking this http://www.diabetes-support.org.uk/info/?page_id=50
and the bit I mean is the link in the second paragraph - "The Five Stages of Grief" - of course you are in mourning!
Blythespirit
Well-Known Member
- Relationship to Diabetes
- Type 2
Natasha,
I'm sorry but I must have missed this when you first posted. A belated welcome to the forums from me. It's good to see that you've had some good supportive replies. There are some wonderful parents on here and I have such respect for all of you who have to deal with children with diabetes. I hope knowing you are not alone and help and support is just the click of a mouse away helps you to cope. Sending my love to you and your daughter. XXXXX
I'm sorry but I must have missed this when you first posted. A belated welcome to the forums from me. It's good to see that you've had some good supportive replies. There are some wonderful parents on here and I have such respect for all of you who have to deal with children with diabetes. I hope knowing you are not alone and help and support is just the click of a mouse away helps you to cope. Sending my love to you and your daughter. XXXXX
Just got angry!
I put in a repeat presciption request for some more testing strips a couple of days ago. Although we are not out, 200 doesn't last that long when you are getting through about 8 a day. I've just had an e-mail back from Abigail's doctors saying that they are unable to provide a repeat prescription as the 200 previously prescribed have to last 90 days! HOW? I have sent a rather abrupt email back asking how I am meant to do this!😡
I put in a repeat presciption request for some more testing strips a couple of days ago. Although we are not out, 200 doesn't last that long when you are getting through about 8 a day. I've just had an e-mail back from Abigail's doctors saying that they are unable to provide a repeat prescription as the 200 previously prescribed have to last 90 days! HOW? I have sent a rather abrupt email back asking how I am meant to do this!😡
Northerner
Admin (Retired)
- Relationship to Diabetes
- Type 1
That is utter nonsense! I get 300 and they last about 50 days maximum. You should never be restricted on test strips when you are on insulin, especially a child. If you meet any further opposition to your requests get your DSN to write to the GP explaining why you should never be denied strips. It sounds like they are applying some rule that does not take account of your situation. Even with a minimum 4 tests a day (before meals and bed), your 200 would only last 50 days, and there are many, many other reasons why you might need to test. I hope they see sense very quickly! 😱
elaine1969
Active Member
- Relationship to Diabetes
- Parent of person with diabetes
I has a similar problem when Kate was first diagnosed. Like Northerner said go to your DSN, mine sorted it out for me. I even looked into buying them myself at the time because we were only just coping with the new diagnosis and I really didn't need any more stress! I had quite a shock when I realised the cost though!!
fencesitter
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
Hello Natasha
I'm so sorry you find yourself on this road, but this is a good place to get help. I just wanted to send a virtual hug and echo everyone else's comments that it does get better! (and I hope the GP sorts out the test strips pronto. Grrr)
My son William is 14 (13 at diagnosis) and was well on the road to being independent. But the diabetes knocked that right back and left us all reeling for a few months, especially as he has another chronic health problem (lymphoedema) which doesn't go well with diabetes. I was so upset
The good news, 8 months down the line, is that diabetes is part of our routine now and doesn't dominate quite so much. We've managed to do things I was terrified of, like spend a day at a theme park, fly abroad on holiday, go on day-long walks etc. I did lots of reading on the net and bought a book called 'Children and young adults with type 1 diabetes' by Ragnar Hanas which I really recommend, and asked questions on boards like this. Gradually we're all getting more confident.
William had a place at music school before the diagnosis, and I never thought he would be able to take it up, but he did. He is a weekly boarder and gets lots of support, and is well and happy. Am I am getting some sleep at last
Lots of love, Catherine
I'm so sorry you find yourself on this road, but this is a good place to get help. I just wanted to send a virtual hug and echo everyone else's comments that it does get better! (and I hope the GP sorts out the test strips pronto. Grrr)
My son William is 14 (13 at diagnosis) and was well on the road to being independent. But the diabetes knocked that right back and left us all reeling for a few months, especially as he has another chronic health problem (lymphoedema) which doesn't go well with diabetes. I was so upset
The good news, 8 months down the line, is that diabetes is part of our routine now and doesn't dominate quite so much. We've managed to do things I was terrified of, like spend a day at a theme park, fly abroad on holiday, go on day-long walks etc. I did lots of reading on the net and bought a book called 'Children and young adults with type 1 diabetes' by Ragnar Hanas which I really recommend, and asked questions on boards like this. Gradually we're all getting more confident.
William had a place at music school before the diagnosis, and I never thought he would be able to take it up, but he did. He is a weekly boarder and gets lots of support, and is well and happy. Am I am getting some sleep at last
Lots of love, Catherine
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