Daughter diagnosed, absolutely devastated...

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schurst44

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Hi,

My daughter (5 years old) has been diagnosed Type 1 officially, however we are in the very early stages where her pancreas is still producing some insulin. I'm told we have caught it very early and thus our learning curve will not be as steeps as most others, whilst this is good to hear I am still gutted that my daughter has this disease and that I can do nothing about it.

I'm really here as I am scared and just want to hear from others who are dealing with the condition as to what I can expect. I'm aware there will be ups and downs, however I'm hopeful that my daughter will still lead a relatively normal life, and that if we keep on top of the management she will be OK. Or is that naive?

Any help/tips/advice is much appreciated.

Thanks
 
Welcome @schurst44 andsorry to hear about your daughter’s diagnosis. A Type 1 diagnosis is stressful and especially so if it’s your child. Tagging @Sally71 who’s the parent of a Type 1 child, along with a number of others here. It all seems overwhelming at first, but it honestly does get easier. The early weeks are hard but after that as each week passes you become more confident.

You’re not naive to think she can lead a normal life. Diabetes shouldn’t stop her doing most things. She’ll just have to think a bit more. There are people with Type 1 doing all kinds of jobs, travelling, being famous (Nick Jonas and others), and just living normal lives like anyone else. The tech we have now makes life easier, and that’s a big help.

Is your daughter on insulin now then? If so, which ones? She’ll probably be offered an insulin pump soon and that’s a good thing as it, again, makes things easier.
 
Hi and welcome. My kid was 8 when diagnosed and is now 12. He leads a normal life, has continued swimming, horse riding, trampolining and all the usual stuff kids do. There are obviously some adjustments with having to inject or deal with a pump and with finger pricking or changing sensors and that’s not always easy with a stubborn child (mine not yours) but we make it through. You will have a lot of info to get your head around to begin with and it can feel insurmountable but you will get to grips with carb counting and with what to do for hypos etc.

Use your team’s psychologist and keep talking to the nurse. We were well supported through those early months and that’s the biggest difference between diagnosis of a child vs as an adult where you’re left to your own devices.

Don’t be afraid to use the out of hours numbers you’re given. If you need help in the middle of the night then call the local paeds ward. You won’t be left on your own to deal with it.

Have a notebook you can scribble the maths in while you get to grips with carb counting and make a list of foods that you have often so you’re not having to work so hard. We still use our carbs and cals book.

It’s ok to grieve the ease of the life you thought she would have. It’s ok to be angry. That’s all part of dealing with a chronic illness. You will adapt. She will cope.
 
Hi @Inka thank you so much for the response.

It's refreshing to hear from others that it's possible to lead a normal life, I know you read these things but it's always best to hear it from people in the know if that makes sense.

She is not currently on insulin, she has a Dexcom fitted and I think the idea is to obtain a picture over the next fortnight of what is happening so that they know when to start the Insulin, we are told it could be weeks or months but ultimately is inevitable.

As a parent, my worst fear is failing her. I'm terrified when the time comes I'll give her too much insulin and what that might do, or that she'll suddenly go down hill and not know what to do. There are all things I'll be asking the professor at the next appointment!!
 
I’m sure you won’t fail her @schurst44 The very fact you’re here asking questions and worrying about her is proof of that 🙂

When she’s started on insulin it’s likely she’ll be started on conservative doses (less than they think she’ll need) and those will gradually be adjusted. So that careful and cautious approach should give you comfort. The Dexcom is a fabulous bit of kit and will alert you to both high and low sugars, so you can make any adjustments necessary. Once she’s on insulin, it will give you peace of mind, especially at night. This is all so different from years ago when we had none of this tech, so now is a much better time to be diagnosed with Type 1 than earlier times.
 
schurst44 said:
Hi,

My daughter (5 years old) has been diagnosed Type 1 officially, however we are in the very early stages where her pancreas is still producing some insulin. I'm told we have caught it very early and thus our learning curve will not be as steeps as most others, whilst this is good to hear I am still gutted that my daughter has this disease and that I can do nothing about it.

I'm really here as I am scared and just want to hear from others who are dealing with the condition as to what I can expect. I'm aware there will be ups and downs, however I'm hopeful that my daughter will still lead a relatively normal life, and that if we keep on top of the management she will be OK. Or is that naive?

Any help/tips/advice is much appreciated.

Thanks
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Tagging @Tom1982 who has a 5 Yr old T1 daughter, diagnosed about 16 months ago and so recently been through the anxiety and concern that you will inevitably and quite naturally feel @schurst44.
 
You will have a lot of support with insulin including what to do if you give too much (eating/drinking enough carbs to counteract it). The first hypo is scary. You will soon get used to the rollercoaster of highs and lows though and build confidence in your ability to cope. Mostly diabetes is very undramatic though and the worst of it is just the grind of not having a break.
 
Hi schurst44, welcome to the forum.

Just popping into say hi and that you're not alone. We have many in the parents' forum who are supporting their children to live a full life with diabetes.

As with anything, there will be some things to get your head around but making small and consistent adjustments will help to make the best of things.

Do pop over to the parent's section and please feel free to ask as many questions as you can, not matter how big or small the issue may be as we're happy to help.
 
Mate - the facilities of the whole NHS Paediatric Diabetes service wherever you happen to be are there as much for you as they are for her, hence if YOU need psychological help - tell the Clinic and jolly well ASK em for it.

This is the same when anyone of any age is first diagnosed with Type 1 diabetes - I was 22. I was 35 before I learned to drive and you know what? - it's much the same as being diagnosed with D - you have to do so many different things with your hands eyesight and feet all at the same time it's very difficult to begin with however you just get into the habit of doing them all, gradually so after a while, you pass your driving test. Then as my instructor said to me with a big grin and a laugh when I did - You can now go and learn to drive, Jen! And so it is with coping with diabetes - it takes time is all, but honestly bit by bit, becomes habit, hence you spot when something unusual happens and start checking everything, to try and see what might have caused it so you can avoid doing that again - or actually start doing it always if it was something good!

Well before Libre or Dexcom etc, I recall a colleague's 8yo being diagnosed and he asked the clinic how they'd know if she went hypo during the night and the reply was that it should wake her up and she'd feel peculiar, and so call her mum or dad - and so it turned out. The only reason I can tell you this is because John didn't know whether to believe it or not really cos it all seemed a bit vague to him and his wife - so he asked me what I thought, even though he and I were well aware I hadn't been diagnosed as a child. I said that it actually seemed quite logical to me with the benefit of 'inside' information - it did wake me up and I did feel very odd indeed - only thing was I couldn't bellow 'MOM!!' or have my big sister helping before mom appeared, any more. :D
 
trophywench said:
Mate - the facilities of the whole NHS Paediatric Diabetes service wherever you happen to be are there as much for you as they are for her, hence if YOU need psychological help - tell the Clinic and jolly well ASK em for it.

This is the same when anyone of any age is first diagnosed with Type 1 diabetes - I was 22. I was 35 before I learned to drive and you know what? - it's much the same as being diagnosed with D - you have to do so many different things with your hands eyesight and feet all at the same time it's very difficult to begin with however you just get into the habit of doing them all, gradually so after a while, you pass your driving test. Then as my instructor said to me with a big grin and a laugh when I did - You can now go and learn to drive, Jen! And so it is with coping with diabetes - it takes time is all, but honestly bit by bit, becomes habit, hence you spot when something unusual happens and start checking everything, to try and see what might have caused it so you can avoid doing that again - or actually start doing it always if it was something good!

Well before Libre or Dexcom etc, I recall a colleague's 8yo being diagnosed and he asked the clinic how they'd know if she went hypo during the night and the reply was that it should wake her up and she'd feel peculiar, and so call her mum or dad - and so it turned out. The only reason I can tell you this is because John didn't know whether to believe it or not really cos it all seemed a bit vague to him and his wife - so he asked me what I thought, even though he and I were well aware I hadn't been diagnosed as a child. I said that it actually seemed quite logical to me with the benefit of 'inside' information - it did wake me up and I did feel very odd indeed - only thing was I couldn't bellow 'MOM!!' or have my big sister helping before mom appeared, any more. :D
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Fascinating. I was 7/8 years old. Woke low on porcine & dealt with it with the unsteady stealth of a ninja.
My dad found out about it when he discovered I’d raided the milk, come morning.

Survival mode. I had a “Janet & John has diabetes” book. (Lol, that was the advice. “If you feel fumny? Tell mummy..” I personally had no time to waste.) a bit patronising of the book. (Think “Mr men graphics?) But I’m still here.

My thoughts for @schurst44 would be, be mindful. But don’t let the family dynamics change. Your kid will grow up to be a fantastic support for you in your advancing years.

As I told my mum when she broached the subject. In my teens. (& paraphrasing.) “Sheds happen.” I’m the only one I know who has erected a shed.. (never seen anyone else.)
 
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:D What very unnaturally well behaved children said Janet & John were indeed, in retrospect ..... OTOH in the 1950s when I was introduced to those two I already knew what happened at home if I didn't behave and that it ruddy well hurt and hence, usually, I did. Which proves the point again that children are, by no means, completely daft!
 
schurst44 said:
Hi,

My daughter (5 years old) has been diagnosed Type 1 officially, however we are in the very early stages where her pancreas is still producing some insulin. I'm told we have caught it very early and thus our learning curve will not be as steeps as most others, whilst this is good to hear I am still gutted that my daughter has this disease and that I can do nothing about it.

I'm really here as I am scared and just want to hear from others who are dealing with the condition as to what I can expect. I'm aware there will be ups and downs, however I'm hopeful that my daughter will still lead a relatively normal life, and that if we keep on top of the management she will be OK. Or is that naive?

Any help/tips/advice is much appreciated.

Than
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schurst44 said:
Hi,

My daughter (5 years old) has been diagnosed Type 1 officially, however we are in the very early stages where her pancreas is still producing some insulin. I'm told we have caught it very early and thus our learning curve will not be as steeps as most others, whilst this is good to hear I am still gutted that my daughter has this disease and that I can do nothing about it.

I'm really here as I am scared and just want to hear from others who are dealing with the condition as to what I can expect. I'm aware there will be ups and downs, however I'm hopeful that my daughter will still lead a relatively normal life, and that if we keep on top of the management she will be OK. Or is that naive?

Any help/tips/advice is much appreciated.

Thanks
Click to expand...
Hello fellow newbie. First day on this forum myself.

I know how you must feel, as both of my daughters were diagnosed under the age of 5 ( eldest was 5 and youngest was 3). When we were told the first time (our eldest) i was devastated. I remember feeling so worried. Almost felt like a bereavement . !! At the time i felt as if it would stop her achieving so much. We also caught her symptoms very early like yourself. I was told that catching it early before it has progressed helps with long term control.

The 1st few years were a worry especially when they start doing things like sleepovers and going to friends houses but they learn so quickly it is amazing. Relinquishing control of their diabetes management when they 1st start doing things out of the house with friends is a challenge but it really did quickly become a case of "what was i worried about".
Both of my daughters did all the stuff that their friends did, played sports, sneaked into pubs,went to uni, graduated and both are now working in good jobs and are happy and healthy.

There will be ups and downs. Sometimes an illness can go on a day or 2 longer. Just as you get used to one type of insulin/regime, something new will come along which will mean tweaking everything but everything will just drop into place.

My girls are 21 and 25 now and i have taken great pride watching them grow up, living normal lives.

Your daughter will be fine and so will you. Just give it a bit of time to sink in..
 
Sean122 said:
Hello fellow newbie. First day on this forum myself.

I know how you must feel, as both of my daughters were diagnosed under the age of 5 ( eldest was 5 and youngest was 3). When we were told the first time (our eldest) i was devastated. I remember feeling so worried. Almost felt like a bereavement . !! At the time i felt as if it would stop her achieving so much. We also caught her symptoms very early like yourself. I was told that catching it early before it has progressed helps with long term control.

The 1st few years were a worry especially when they start doing things like sleepovers and going to friends houses but they learn so quickly it is amazing. Relinquishing control of their diabetes management when they 1st start doing things out of the house with friends is a challenge but it really did quickly become a case of "what was i worried about".
Both of my daughters did all the stuff that their friends did, played sports, sneaked into pubs,went to uni, graduated and both are now working in good jobs and are happy and healthy.

There will be ups and downs. Sometimes an illness can go on a day or 2 longer. Just as you get used to one type of insulin/regime, something new will come along which will mean tweaking everything but everything will just drop into place.

My girls are 21 and 25 now and i have taken great pride watching them grow up, living normal lives.

Your daughter will be fine and so will you. Just give it a bit of time to sink in..
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Thank you so much for this. It's really nice to hear stories like this and fills me with a lot of hope.

I'm so pleased to hear your daughters are doing so well, props to you as a family!
 
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