My son was Diagnosed type 1 in November 2012 he is 6 years old he be 7 in may. We are in a routine but I still feel how I did when he was first diagnosed. I worry so much, I feel angry , I feel like it's not fair. I hate all the hassle that it causes for him & us a family, it breaks my heart 2 do the injections (I don't let him see me upset) all the visits to hospital/doctors & always going to the chemists it's so draining. I know there are children with worst things then this but to me this is HELL just doesn't seem fair. I find myself worrying about things that we havant even come across yet... I'm just not sure how long I'm meant to feel like this... This has been very sad & hard times for us all... Any help or advise please thank you.
Struggling parent
- Thread starter Sarah25
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Hi Sarah 25
Don't despair I can empathise with everything you have said. My James was diagnosed at the age of 3 he will be 16 on Tuesday and am a very proud Mum for what he goes through. There will be good days and bad days but overall YOU WILL cope and everything will become second nature you'll see. Kids seem to cope better than us, I remember walking away crying after giving injections and that too goes in time.
I am sure you will have more positive feedback from others parents soon.
Best wishes x
Don't despair I can empathise with everything you have said. My James was diagnosed at the age of 3 he will be 16 on Tuesday and am a very proud Mum for what he goes through. There will be good days and bad days but overall YOU WILL cope and everything will become second nature you'll see. Kids seem to cope better than us, I remember walking away crying after giving injections and that too goes in time.
I am sure you will have more positive feedback from others parents soon.
Best wishes x
Hi we were diagnosed in December in 2012.
I know exactly how you feel. I still cry on a daily basis. But I have to carry on for my sons sake. I'm hoping in time we will have better coping strategies. Its heartbreaking, unfair, exhausting, life changing and most of the time I am a zombie. But I have to get through it for my son. Who's not only an amazing child but has to be my strength.
Be strong. Try looking forward, rather than backwards. Easier said I know. But we have to give them the best start. You are strong. You just dont know how strong yet. Pm me anytime and im happy to chat. Im in the same boat hun. X
I know exactly how you feel. I still cry on a daily basis. But I have to carry on for my sons sake. I'm hoping in time we will have better coping strategies. Its heartbreaking, unfair, exhausting, life changing and most of the time I am a zombie. But I have to get through it for my son. Who's not only an amazing child but has to be my strength.
Be strong. Try looking forward, rather than backwards. Easier said I know. But we have to give them the best start. You are strong. You just dont know how strong yet. Pm me anytime and im happy to chat. Im in the same boat hun. X
My son is type1 and 9yearsold. Thankfully he just gets on with life and leaves me to worry which is something I'm excellent at. Even sending him out on his s bike to see his friend makes me concerned that he'll have a hypo and be too,poorly to come home. The whole thing is exhausting. Jude's had diabetes for 18months and has recently had a pump fitted. Even though I can def see its advantages I feel like we're back st the diagnosis stage. Anyway the reason I'm telling you this is to let you know that you're not alone. X
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Thank you very much to everyone who has replied.. Iv had so many friends & family say lovely things to me & lots of support but sounds awful but it doesn't seem to help how I'm feeling. Yet just reading your posts has made me feel slightly better, it's so good to listen & talk to others in same boat! Thank you. I am very new to this site not sure how to use it yet or privet message people or add people (if you do add people) not to sure how all this work? But seems a great way to talk...
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Hi Sarah. My son is 9 and was diagnosed 6 weeks ago. He is amazing and definitely been my strength through this, he's doing all his own injections and testing and is quite proud to share this feat with anyone who wants to watch!! I cried for most of the first 2 weeks after which we rolled up our sleeves and got on with life, which has pretty much returned to normal- except of course we test and jab frequently!! The best source of support has definitely been other mums in the same situation, always here for advise/ support!
Tracy x
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Tracy x
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Hi Sarah
I'm probably a rubbish one to reply, Oscar was dx 7 weeks ago he is 3 in June. And I'm a mess. I've cried every day. I've broken my heart. I hate it. I'm just hoping it gets better. I'm sorry to sound negative. I've just had a new baby so hormones probably aren't helping. Just can't believe it's happened to my baby. I just feel like a need a hug from someone who understands x x
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I'm probably a rubbish one to reply, Oscar was dx 7 weeks ago he is 3 in June. And I'm a mess. I've cried every day. I've broken my heart. I hate it. I'm just hoping it gets better. I'm sorry to sound negative. I've just had a new baby so hormones probably aren't helping. Just can't believe it's happened to my baby. I just feel like a need a hug from someone who understands x x
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Hi All .
Keep popping on here , chat and cry and laugh together .
Its what the forum is here for ...
Make and add new friends with each other .
((((hugs)))) for you all ... MrsDMiles you too .
You are all FANTASTIC and each love your precious child dearly .
Only human as you stand and it 'hurts' when its your own child I understand.
It is unfair and still a mystery as to why it is so ...
My wish is that 'NO' child should ever have Diabetes .
The children are strong and brave little soldiers and will do their best for you mums and dads .
Some times with your pride in your own childs strength and courage coping/dealing with Diabetes.
It is then - in your childs strength and bravery - when your child is sustaining and supporting you as you struggle to cope .
On a more positive/copable day you can look back and see how far you have all travelled .
A childs innocence and resilience is a real saving 'grace' - it can help carry a poor heartbroken parent .
Kiddies 'are' stronger than you may be feeling at present .
They do find it easier to forget things far better - than a poor parent can .
The thoughts of it all can crush or overwhelm - yet the deed [injections regime etc] saves ...
I have to keep reminding myself of this one .
An american mum told me this mental mantra chant to herself, got her through each day with her daughter.
Hearing this - helped me - as I am a real softie with children .
Hope this post can help reassure you all .
Anna.
Keep popping on here , chat and cry and laugh together .
Its what the forum is here for ...
Make and add new friends with each other .
((((hugs)))) for you all ... MrsDMiles you too .
You are all FANTASTIC and each love your precious child dearly .
Only human as you stand and it 'hurts' when its your own child I understand.
It is unfair and still a mystery as to why it is so ...
My wish is that 'NO' child should ever have Diabetes .
The children are strong and brave little soldiers and will do their best for you mums and dads .
Some times with your pride in your own childs strength and courage coping/dealing with Diabetes.
It is then - in your childs strength and bravery - when your child is sustaining and supporting you as you struggle to cope .
On a more positive/copable day you can look back and see how far you have all travelled .
A childs innocence and resilience is a real saving 'grace' - it can help carry a poor heartbroken parent .
Kiddies 'are' stronger than you may be feeling at present .
They do find it easier to forget things far better - than a poor parent can .
The thoughts of it all can crush or overwhelm - yet the deed [injections regime etc] saves ...
I have to keep reminding myself of this one .
An american mum told me this mental mantra chant to herself, got her through each day with her daughter.
Hearing this - helped me - as I am a real softie with children .
Hope this post can help reassure you all .
Anna.
To all you caring Mums who have posted here (from an experienced T1) ...
One of the key issues to overcoming the initial shock of knowing your child has been diagnosed with a lifelong condition is to gain as much knowledge as possible. For managing diabetes .. knowledge is power.
As you gain more knowledge then your initial fears will subside, you will gain in confidence and ultimately you will realise that this condition can be controlled so that your child can indeed live a long and healthy life and it should not stop them doing anything they wanted to do.
That has been my attitude, and although I've been T1 for 43 years, diagnosed in the late 1960s when the medication and technology was very basic compared to today, I've never let my condition restrict what I wanted to do in anything .... relationships, family life, career, travel and leisure pursuits. I took my diabetes seriously, I controlled by diabetes and didn't let it control me! So after more than four decades I have none of the complications that can occur from poorly controlled blood glucose over an extended period. Gaining knowledge, and then using it to maintain good blood glucose levels, was key to my strategy.
So where to start to gain this knowledge?
Documents available on the internet:-
Note: if your child is still young then the concept of carb counting and associated insulin adjustment may not yet be appropriate, but eventually this will be needed, since all adult T1 diabetics should be using carb counting in order to get good blood glucose control.
A. An introduction to carbohydrate counting and insulin dose adjustment
https://shop.diabetes.org.uk/store/lite ... -book.aspx
An excellent introductory document from Diabetes UK that covers all aspects of diabetes, and the method of carb counting, insulin adjustment and insulin-carb ratios is covered in Chapter 2 (Carbohydrates) and Chapter 3 (Insulin). Even if you are not doing carb counting, you should definitely read this!
B. Adjusting your Insulin when results are too high or too low:
A detailed guide, with plenty of examples, to assist you in making required insulin adjustments. Download it and print it out so it is readily at hand after blood sugars have been made & recorded.
http://www.amazon.co.uk/product-reviews ... Change.pdf
Books you should consider purchasing:-
1. Carbs & Cals: A Visual Guide to Carbohydrate & Calorie Counting for People with Diabetes (Chris Cheyette)
Buy this excellently illustrated book that provides clear pictures, portion sizes & weights plus carbohydrate values of nearly every food you might need.
http://www.amazon.co.uk/gp/product/0956 ... 01_s00_i01
2. Type 1 Diabetes in Children, Adolescents and Young Adults (Ragnar Hanas)
A comprehensive book with great detail in all aspects of managing diabetes with emphasis on children. This is easily the best book I have ever read about managing Type 1 diabetes, so if you only buy one book …. this is the one.
http://www.amazon.co.uk/Type-1-Diabetes ... gnar+Hanas
Note: Ensure that you consult your DSN before making any changes to the current insulin and diet regime. They are medically trained to answer your queries and should always be consulted on such issues, particularly in the early days during the steep learning curve.
I hope you find these references useful, and I wish you and your child every success on your long journey ...
Jonty
One of the key issues to overcoming the initial shock of knowing your child has been diagnosed with a lifelong condition is to gain as much knowledge as possible. For managing diabetes .. knowledge is power.
As you gain more knowledge then your initial fears will subside, you will gain in confidence and ultimately you will realise that this condition can be controlled so that your child can indeed live a long and healthy life and it should not stop them doing anything they wanted to do.
That has been my attitude, and although I've been T1 for 43 years, diagnosed in the late 1960s when the medication and technology was very basic compared to today, I've never let my condition restrict what I wanted to do in anything .... relationships, family life, career, travel and leisure pursuits. I took my diabetes seriously, I controlled by diabetes and didn't let it control me! So after more than four decades I have none of the complications that can occur from poorly controlled blood glucose over an extended period. Gaining knowledge, and then using it to maintain good blood glucose levels, was key to my strategy.
So where to start to gain this knowledge?
Documents available on the internet:-
Note: if your child is still young then the concept of carb counting and associated insulin adjustment may not yet be appropriate, but eventually this will be needed, since all adult T1 diabetics should be using carb counting in order to get good blood glucose control.
A. An introduction to carbohydrate counting and insulin dose adjustment
https://shop.diabetes.org.uk/store/lite ... -book.aspx
An excellent introductory document from Diabetes UK that covers all aspects of diabetes, and the method of carb counting, insulin adjustment and insulin-carb ratios is covered in Chapter 2 (Carbohydrates) and Chapter 3 (Insulin). Even if you are not doing carb counting, you should definitely read this!
B. Adjusting your Insulin when results are too high or too low:
A detailed guide, with plenty of examples, to assist you in making required insulin adjustments. Download it and print it out so it is readily at hand after blood sugars have been made & recorded.
http://www.amazon.co.uk/product-reviews ... Change.pdf
Books you should consider purchasing:-
1. Carbs & Cals: A Visual Guide to Carbohydrate & Calorie Counting for People with Diabetes (Chris Cheyette)
Buy this excellently illustrated book that provides clear pictures, portion sizes & weights plus carbohydrate values of nearly every food you might need.
http://www.amazon.co.uk/gp/product/0956 ... 01_s00_i01
2. Type 1 Diabetes in Children, Adolescents and Young Adults (Ragnar Hanas)
A comprehensive book with great detail in all aspects of managing diabetes with emphasis on children. This is easily the best book I have ever read about managing Type 1 diabetes, so if you only buy one book …. this is the one.
http://www.amazon.co.uk/Type-1-Diabetes ... gnar+Hanas
Note: Ensure that you consult your DSN before making any changes to the current insulin and diet regime. They are medically trained to answer your queries and should always be consulted on such issues, particularly in the early days during the steep learning curve.
I hope you find these references useful, and I wish you and your child every success on your long journey ...
Jonty
sarah 25
You are a normal loving parent.
I've never experienced your worries, but I am a parent and grandparent.
I think you need support from others in a similar position to yourself. Contact Diabets UK, who have support groups listed.
Hana
You are a normal loving parent.
I've never experienced your worries, but I am a parent and grandparent.
I think you need support from others in a similar position to yourself. Contact Diabets UK, who have support groups listed.
Hana
Hi
Our Son was diagnosed just over 2 weeks ago he is only 6. I feel quilty and wich it was me that has this and so gutted for him and find the 'forever' bit hard to come to terms with. What I have done over the last few weeks is read loads of information. The support from hospital Team and family and friends have been amazing. I am trying to take every day as it come. A very steep learning curve for us all .
Any tips from anyone?
Thanks
Our Son was diagnosed just over 2 weeks ago he is only 6. I feel quilty and wich it was me that has this and so gutted for him and find the 'forever' bit hard to come to terms with. What I have done over the last few weeks is read loads of information. The support from hospital Team and family and friends have been amazing. I am trying to take every day as it come. A very steep learning curve for us all
.Any tips from anyone?
Thanks
Hi
I know exactly what you are going through. My 10 year old son was diagnosed with type 1 just over 5 weeks ago (although have to say it feels like a lot longer) and it felt like our world had been torn apart. Coming to terms with the diagnosis and learning to carbohydrate count is a very steep learning curve and we have been bombarded with information.
I have to say though he has coped with it brilliantly and for the most part takes it all in his stride. We have ups and downs but its still early days. One of the hardest things is trying to work out sometimes if his mood swings are blood sugar related or just him being stroppy!!
The support from the DSN's at our local hospital has been fantastic and we also have a lot of support from family and friends.
I know how scary everything seems in the beginning but there is lots of support and advice on the forum too. Children are truly amazing in how they adapt and cope with life changing events such as this. I know there will be many hurdles we will all have to face in the coming weeks and months but it is reassuring to know that I am not alone and am here to help and support any way I can.
Andrea
x
I know exactly what you are going through. My 10 year old son was diagnosed with type 1 just over 5 weeks ago (although have to say it feels like a lot longer) and it felt like our world had been torn apart. Coming to terms with the diagnosis and learning to carbohydrate count is a very steep learning curve and we have been bombarded with information.
I have to say though he has coped with it brilliantly and for the most part takes it all in his stride. We have ups and downs but its still early days. One of the hardest things is trying to work out sometimes if his mood swings are blood sugar related or just him being stroppy!!
The support from the DSN's at our local hospital has been fantastic and we also have a lot of support from family and friends.
I know how scary everything seems in the beginning but there is lots of support and advice on the forum too. Children are truly amazing in how they adapt and cope with life changing events such as this. I know there will be many hurdles we will all have to face in the coming weeks and months but it is reassuring to know that I am not alone and am here to help and support any way I can.
Andrea
x
donnellysdogs
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Heart breaking to see all responses here.. I just out of being teenager when diagnosed.. My mum now I'm 50 this year still feels the same as all you younger parents with young children. Even though she knows I'm fit and healthy.. It breaks her heart to see my pump and cgm as was... The hurt and anger of diagnosis reduces... But it will never go away... Because we are humans.. We love our children...and want the bestforthem.
You will all feel better to some degree, but I also suspect that parents take on the depression that can hit us older diabetics on our diagnoses...it can be overwhelming.. But as you see your children coping it will help you too.
You will all feel better to some degree, but I also suspect that parents take on the depression that can hit us older diabetics on our diagnoses...it can be overwhelming.. But as you see your children coping it will help you too.
Shzz46
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Hi everyone my son was diagnosed type1 when he was 20 when he was first diagnosed I was frightened I was going to kill him didn't knows what to give him to eat I was frightened was I giving him too much or too little to eat I started picking up any leaflet or books that was anything to do with diabetes now his diabetes is just part of life then 3 years ago I was diagnosed type 2 so it wasn't such a shock as I was used to dealing with diabetes
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donnellysdogs
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Shzz46
How do you feel now about your sons diagnosis of diabetes?
How old is he now?
Just find it so intersting as I was early 20's when dxd... I think I know how my mum felt and feels, but first time I've seen a posting about this for an older child parent...
By way, 50 this year and fit and healthy.. No complications...
How do you feel now about your sons diagnosis of diabetes?
How old is he now?
Just find it so intersting as I was early 20's when dxd... I think I know how my mum felt and feels, but first time I've seen a posting about this for an older child parent...
By way, 50 this year and fit and healthy.. No complications...
I too am a struggking parent. Its really hard trying to work out if my 7yr old is stropping because hes 7 or if hes low. Once done a bm and see hes low i feel so guilty for telling him off, i really dont think he knows how hes behaving at the time. The hardest thing i find are the 4.30am hypos hes been having. Cant then leave him to go back to bed myself. Alsi any advice on what to do when he refuses to have his insulin?
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Shzz46
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Hi donnellys dogs I'm fine about his diabetes now I was like all the rest of the parents angry wondering why my son he's 28 now but hey they always your kids does not matter how old they are he's only had one bad hypo in the 8 years apart from that he's managed fine
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Dougal
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I think you are all extremely brave, your children are lucky to have you. I have never been lucky enough to be blessed with children, I was diagnosed T1 when I was 13. I have battled with my Diabetes for years, until about 2 years ago my DSN said something that finally helped me to come to terms with my situation and I'd like to pass it on in case it can help someone else.
She told me to give myself time to grieve, time to grieve for the loss of normality, for the way things used to be. If you think about it, it sounds as though some of you may be suffering from survivor's guilt . . .
Please be kind to yourselves, don't expect to know everything today, I have been diabetic for 27 years and my diabetes still surprises me.
I hope this helps . . . . .
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She told me to give myself time to grieve, time to grieve for the loss of normality, for the way things used to be. If you think about it, it sounds as though some of you may be suffering from survivor's guilt . . .
Please be kind to yourselves, don't expect to know everything today, I have been diabetic for 27 years and my diabetes still surprises me.
I hope this helps . . . . .
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donnellysdogs
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So very exact Dougal... Survivors guilt is a great description....
Shzz46.. Glad to hear details of how you and son feel 8 years on... When my dad died he left letters to us all... To my Mum, it said for her to take special care of me, (i have brothers). I think she really took this to heart ... 20 years on from him dying.. She still says... Its what your dad would want....(because of the diabetes, or because I was the only girl? I don't know.. Nice to know that your feelings and your son being good.
I
Shzz46.. Glad to hear details of how you and son feel 8 years on... When my dad died he left letters to us all... To my Mum, it said for her to take special care of me, (i have brothers). I think she really took this to heart ... 20 years on from him dying.. She still says... Its what your dad would want....(because of the diabetes, or because I was the only girl? I don't know.. Nice to know that your feelings and your son being good.
I
