Hi my son was diagnosed Thursday with Type1 diabetes which was also his 16th birthday !! We’re still all getting over the shock of it but coping ok at the moment but any help and advice would be very much appreciated. Thank you
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- Thread starter Lisa2804
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SB2015
Well-Known Member
- Relationship to Diabetes
- Type 1
Welcome Lisa.
Sorry to hear about your son’s diagnosis. As you say it is a big shock and there is a lot to take on board very quickly. How was your son diagnosed. Is he still in hospital or home now?
This is a manageable condition, it just takes a bit of organisation and planning. First is just getting used to the Injections and testing, which will just become the new ‘normal life’ for him. Can you tell us what insulin’s he is using?
I was recommended the book Type 1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas. It is excellent and very clear and regularly updated with the latest technology,so worth getting the latest edition. In spite of the age reference (I was 53 at diagnosis) it is a very useful reference.
I have learnt most of what I know about managing my condition from others on here, so just ask absolutely any questions you have. There is a specific section for parents where there others in your position who can give more specific help, such as @Bronco Billy and @Sally71 who will no doubt pop in with lots of good advice, and pointers to other resources. One site that I was very impressed by is DigiBete. There is excellent support on there for both you and your son, with some good videos from people living with T1.
Is your son still at school, or at college. It will be useful to get in touch with them to ensure that he has access to any support that he may need. Later on we can offer advice about preparing for and taking exams, for which he will need special arrangements to allow extra time if he has a hypo or hyper.
Lots to learn but loads of support available. Just ask (or rant which is also very understandable)
Sorry to hear about your son’s diagnosis. As you say it is a big shock and there is a lot to take on board very quickly. How was your son diagnosed. Is he still in hospital or home now?
This is a manageable condition, it just takes a bit of organisation and planning. First is just getting used to the Injections and testing, which will just become the new ‘normal life’ for him. Can you tell us what insulin’s he is using?
I was recommended the book Type 1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas. It is excellent and very clear and regularly updated with the latest technology,so worth getting the latest edition. In spite of the age reference (I was 53 at diagnosis) it is a very useful reference.
I have learnt most of what I know about managing my condition from others on here, so just ask absolutely any questions you have. There is a specific section for parents where there others in your position who can give more specific help, such as @Bronco Billy and @Sally71 who will no doubt pop in with lots of good advice, and pointers to other resources. One site that I was very impressed by is DigiBete. There is excellent support on there for both you and your son, with some good videos from people living with T1.
Is your son still at school, or at college. It will be useful to get in touch with them to ensure that he has access to any support that he may need. Later on we can offer advice about preparing for and taking exams, for which he will need special arrangements to allow extra time if he has a hypo or hyper.
Lots to learn but loads of support available. Just ask (or rant which is also very understandable)
Bronco Billy
Moderator
- Relationship to Diabetes
- Parent of person with diabetes
Hi Lisa2804, welcome to the club. That’s one birthday none of you will forget!
As SB2015 said, type 1 is a manageable condition. Yes, it takes a lot of getting used to, but this will happen and it will get easier. All the changes you are having to make to your lives that seem really difficult now will become routine to the point where you don’t really notice and it is all part of ‘normal’ life.
If there is anything you want to know, please ask away. No question is too silly. Until then, let me tell you a bit about my experience and, more importantly, my children’s experience.
I have two children with the condition, they were diagnosed a few months apart about nine and a half years ago. My daughter was 6 and my son was 5. Life was very, very hectic for me one way or another when my daughter was diagnosed. So much so that I didn’t realise until she came out of hospital a few days later how serious it was. Crazy, I know, but true. Once the truth dawned, I realised our lives had just changed in a really big way and also realised that I didn’t know how. What followed was possibly the steepest learning curve my wife and I have ever had to undertake, but we did it. Don’t ask me how, but we did. I guess it was a case of having no alternative. Insulin ratios, carb counting, correcting highs and lows, injections; we were hit with a lot of things to get used to. Sure, we made mistakes along the way (a classic is injecting long acting insulin instead of short acting, or vice-versa) but we and our daughter survived and slowly but surely, life got easier. The fog slowly cleared as we became more experienced and knowledgeable. We grew the confidence to make our own decisions about ratio changes etc. The medical teams are fantastic, but no-one knows your child and how certain things affect them like you do.
My daughter had to have a minor operation to check for coeliac as one of her blood tests had indicated the possibility she might have it. The consultant who would be performing the operation came to see us at her bedside the night before to tell us what would be happening the next day. When he had gone, I spent the rest of the evening working out how to handle various scenarios the following morning. She was on a pump at this stage. When the anaesthetist came to the bed next morning, he said “Right Mr Paxton, we need to talk about what we are going to do about your daughter’s pump.” As I had already tested her, I knew exactly what I wanted to do so simply told him (rather than ask him) and he accepted it. The results were negative, by the way.
My children have never let it stop them doing what they want to do. My daughter is a keen swimmer and has swum competitively for the local club. My son used to swim but has now taken up taekwon-do.
Given your son’s age, I guess he will be taking GCSEs soon. The link below goes to the page on the website that has an exams toolkit for you and the school to look at. He is entitled to certain considerations due to his condition. For example, if he has to treat a hypo, the clock should be stopped and extra time given at the end. Have a chat to your son about what he wants and then tell the school rather than let them dictate what will happen. As schools are judged on results, it is in their interests to make the exams as stress free for your son as possible. My daughter will also take her GCSEs in May and June. I contacted the school and told them what we wanted and what their responsibilities were. They were great and even suggested one or two things that I hadn’t thought of. Don’t be afraid to tell them what you and your son want. If you would like some help with this, please post on the ‘diabetes in school’ board as it will get the best response there.
https://shop.diabetes.org.uk/search?q=make+the+grade
Good luck with everything. I bet you are doing a great job and your son is coping really well.
As SB2015 said, type 1 is a manageable condition. Yes, it takes a lot of getting used to, but this will happen and it will get easier. All the changes you are having to make to your lives that seem really difficult now will become routine to the point where you don’t really notice and it is all part of ‘normal’ life.
If there is anything you want to know, please ask away. No question is too silly. Until then, let me tell you a bit about my experience and, more importantly, my children’s experience.
I have two children with the condition, they were diagnosed a few months apart about nine and a half years ago. My daughter was 6 and my son was 5. Life was very, very hectic for me one way or another when my daughter was diagnosed. So much so that I didn’t realise until she came out of hospital a few days later how serious it was. Crazy, I know, but true. Once the truth dawned, I realised our lives had just changed in a really big way and also realised that I didn’t know how. What followed was possibly the steepest learning curve my wife and I have ever had to undertake, but we did it. Don’t ask me how, but we did. I guess it was a case of having no alternative. Insulin ratios, carb counting, correcting highs and lows, injections; we were hit with a lot of things to get used to. Sure, we made mistakes along the way (a classic is injecting long acting insulin instead of short acting, or vice-versa) but we and our daughter survived and slowly but surely, life got easier. The fog slowly cleared as we became more experienced and knowledgeable. We grew the confidence to make our own decisions about ratio changes etc. The medical teams are fantastic, but no-one knows your child and how certain things affect them like you do.
My daughter had to have a minor operation to check for coeliac as one of her blood tests had indicated the possibility she might have it. The consultant who would be performing the operation came to see us at her bedside the night before to tell us what would be happening the next day. When he had gone, I spent the rest of the evening working out how to handle various scenarios the following morning. She was on a pump at this stage. When the anaesthetist came to the bed next morning, he said “Right Mr Paxton, we need to talk about what we are going to do about your daughter’s pump.” As I had already tested her, I knew exactly what I wanted to do so simply told him (rather than ask him) and he accepted it. The results were negative, by the way.
My children have never let it stop them doing what they want to do. My daughter is a keen swimmer and has swum competitively for the local club. My son used to swim but has now taken up taekwon-do.
Given your son’s age, I guess he will be taking GCSEs soon. The link below goes to the page on the website that has an exams toolkit for you and the school to look at. He is entitled to certain considerations due to his condition. For example, if he has to treat a hypo, the clock should be stopped and extra time given at the end. Have a chat to your son about what he wants and then tell the school rather than let them dictate what will happen. As schools are judged on results, it is in their interests to make the exams as stress free for your son as possible. My daughter will also take her GCSEs in May and June. I contacted the school and told them what we wanted and what their responsibilities were. They were great and even suggested one or two things that I hadn’t thought of. Don’t be afraid to tell them what you and your son want. If you would like some help with this, please post on the ‘diabetes in school’ board as it will get the best response there.
https://shop.diabetes.org.uk/search?q=make+the+grade
Good luck with everything. I bet you are doing a great job and your son is coping really well.
Hi thanks so much for your reply Zach is now home from hospital his gp admitted him Thursday evening he was showing all the signs of diabetes and me being the neurotic mother I am took him to see the doctor thank god I did !!
The insulin he’s using is NovoRapid
He’s at school and will be sitting his exams shortly which is really worrying me but we are in school today with his diabetic nurse to set out his care plan.
I am a bit overwhelmed at the moment trying to hold it together for everyone his Dad as taken it really bad but Zach I can honestly say as been amazing just basically getting on with it, don’t get me wrong we’ve had a few angry and tearful moments which we’ve got through together.
At the moment we’re just taking it day by day.
The insulin he’s using is NovoRapid
He’s at school and will be sitting his exams shortly which is really worrying me but we are in school today with his diabetic nurse to set out his care plan.
I am a bit overwhelmed at the moment trying to hold it together for everyone his Dad as taken it really bad but Zach I can honestly say as been amazing just basically getting on with it, don’t get me wrong we’ve had a few angry and tearful moments which we’ve got through together.
At the moment we’re just taking it day by day.
Thanks so much some very useful information there as you know it can be quite overwhelming at first but taking it day by day !
In school today to set out his care plan and hopefully get some reassurance about his exams thanks for that bit of information it’s good to know these things before hand.
In school today to set out his care plan and hopefully get some reassurance about his exams thanks for that bit of information it’s good to know these things before hand.
SB2015
Well-Known Member
- Relationship to Diabetes
- Type 1
I am glad that Zach is getting in with things so well. That will be an indication of the support that you are both giving him. Well done to all of you.
Let us know how the meeting goes with the school.
The important thing in the exams is to make sure that your son tests if he feels at all weird.
One thing I impressed on my student that had T1, when we were in the run up to exams was that, when I drive, if I have a hypo, I am required to wait 45 minutes before driving again. I encouraged her to make sure that if she had a hypo in an exam to wait and give herself time before returning to her work. Having said that she had no hypos at all.
On DiaBete another student talks about being allowed time if she went high to go to the loo and have a walk about to get her levels down before giong back to the exam.
The important thing is to ensure that zach has the facility to stop the clock.
Keep in touch with absolutely any questions that you have.
Bronco Billy
Moderator
- Relationship to Diabetes
- Parent of person with diabetes
Hi Lisa. It’s great that the DSNs have been to the school so quickly. I probably found it harder to deal with than my wife did, on both occasions. She is the ‘get on with it’ type, while I am more of a dweller. I ask myself questions that can’t be answered. Sometimes, dads find these things harder to deal with because we see ourselves as protectors. I could protect my children from being run over, from being bullied at school (they weren’t, this is just an example), but I couldn’t protect them from this bloomin’ condition. I hated myself for that! I hope dad will get involved in caring for your son. Type 1 is a team sport that needs the parents to support each other and he will benefit psychologically from knowing he has the knowledge to step up when needed. If he wants to message me from your account, I will happily chat with him.
Bronco Billy
Moderator
- Relationship to Diabetes
- Parent of person with diabetes
Good morning
We’ve had a tough week Zachs friend took his own life last weekend so not only as he to come to terms with his T1 he has to deal with losing a best friend !! We have a great support team around us and family so we will get through this together.
Tony (Dad) has been amazing showed so much patience with him when things have been not so good more so than me I think.
We had an appointment with his consultant Friday and she’s happy on how things are going to say it’s only just over 2 weeks he’s managing really well.
We’ve spoken to school about his exams and reassured us on the drill so to speak on if he has an hypo but will speak to them again closer to the time.
Thank you so much for asking after Zach and us sometimes you think you’re on your own and no one understands what you’re going through at the moment it feels like we’ve lost a part of our little boy and it’s heartbreaking it’s good to know that people are out there knowing exactly what we are going through so thank you again.
We’ve had a tough week Zachs friend took his own life last weekend so not only as he to come to terms with his T1 he has to deal with losing a best friend !! We have a great support team around us and family so we will get through this together.
Tony (Dad) has been amazing showed so much patience with him when things have been not so good more so than me I think.
We had an appointment with his consultant Friday and she’s happy on how things are going to say it’s only just over 2 weeks he’s managing really well.
We’ve spoken to school about his exams and reassured us on the drill so to speak on if he has an hypo but will speak to them again closer to the time.
Thank you so much for asking after Zach and us sometimes you think you’re on your own and no one understands what you’re going through at the moment it feels like we’ve lost a part of our little boy and it’s heartbreaking it’s good to know that people are out there knowing exactly what we are going through so thank you again.
Bronco Billy
Moderator
- Relationship to Diabetes
- Parent of person with diabetes
Hi Lisa. I remember reading about Zach’s friend on another thread. I can’t imagine how tough that has been for him.
Well done Dad! Like I said before, dealing with diabetes is a team effort. You’ll support each other and one will step up when the other falls back. The offer for him to message me is still open.
I hope you found the link to the exams information useful. If what the school are saying to you is satisfactory, the great, but don’t be afraid to put your own ideas and requirements to them.
While this forum is here, you’re never alone Take care.
Well done Dad! Like I said before, dealing with diabetes is a team effort. You’ll support each other and one will step up when the other falls back. The offer for him to message me is still open.
I hope you found the link to the exams information useful. If what the school are saying to you is satisfactory, the great, but don’t be afraid to put your own ideas and requirements to them.
While this forum is here, you’re never alone Take care.
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