Mum Feeling Scared

[Su3ieTom]

Hi. My son (14) just been diagnosed with type 1. I am feeling so scared and overwhelmed by it all. Anyone else here in same position?

 

[Guzzler]

Hello and welcome to the forum. If you look further down the forum list page you will find the 'Children and Young People' area and the area for parents and carers. You can also ask any questions of the many people who have Type 1 Diabetes.
Sending you hugs, this must be overwheming right now but members here will advise and support you and your lad all the way.

 

[Su3ieTom]

Hello and welcome to the forum. If you look further down the forum list page you will find the 'Children and Young People' area and the area for parents and carers. You can also ask any questions of the many people who have Type 1 Diabetes.
Sending you hugs, this must be overwheming right now but members here will advise and support you and your lad all the way.

Thank you, will take a look x

 

[Scott-C]

Hi. My son (14) just been diagnosed with type 1. I am feeling so scared and overwhelmed by it all. Anyone else here in same position?

It is always a big shock at diagnosis, but, believe me, while it can be a frustrating condition to manage because of the amount of thought we need to put into juggling insulin and carbs, we live remarkably normal and unrestricted lives.

Sports, travel, university, careers, they're all still in the picture - we can even eat cake if we want to!

Once you get over the initial shock and learn some of the ground rules for calculating insulin doses, it becomes much less scary.

There's a good book, Think Like a Pancreas, by Gary Scheiner, which is a useful guide to the basics, and a longer term reference book. It's on kindle.

One of the big new things is cgm - continuous glucose monitoring - which lets us see glucose levels all the time. It makes life a lot easier because we can see how our levels are moving and take small steps to keep them in line before going too high or low.

Some NHS areas are providing a version of it free on prescription, the Freestyle Libre sensor. It's still a postcode lottery depending on which area you're in but things are moving in the right direction.

If you're not in an area prescribing it, it can be bought privately for £75 to £100 per month depending on the supplier.

It makes a huge difference, even for old timers like me, so I'd encourage you to look into it. There's a good book about it, Sugar Surfing by Stephen Ponder.

I was dx'd age 21, a bit older than your boy, and I'm doing fine 30 years later. I think my parents worry about it more than I do! Children are tough young critters - he'll find his own way of dealing with it.

 

[DCUKMod]

Hi. My son (14) just been diagnosed with type 1. I am feeling so scared and overwhelmed by it all. Anyone else here in same position?

Hi Su3ieTom - It's bound to be a huge shaock when a diagnosis like this comes out of the blue.

One Mum I can think of off the top on my head if @Jayden2407 . Her son Jayden is 11, I think, and a few weeks ahead of your young man, but I'm sure she'll be pleased to "meet" you.

@Jayden2407 - Thanks in anticipation. You're an old hand now.

 

[Su3ieTom]

It is always a big shock at diagnosis, but, believe me, while it can be a frustrating condition to manage because of the amount of thought we need to put into juggling insulin and carbs, we live remarkably normal and unrestricted lives.

Sports, travel, university, careers, they're all still in the picture - we can even eat cake if we want to!

Once you get over the initial shock and learn some of the ground rules for calculating insulin doses, it becomes much less scary.

There's a good book, Think Like a Pancreas, by Gary Scheiner, which is a useful guide to the basics, and a longer term reference book. It's on kindle.

One of the big new things is cgm - continuous glucose monitoring - which lets us see glucose levels all the time. It makes life a lot easier because we can see how our levels are moving and take small steps to keep them in line before going too high or low.

Some NHS areas are providing a version of it free on prescription, the Freestyle Libre sensor. It's still a postcode lottery depending on which area you're in but things are moving in the right direction.

If you're not in an area prescribing it, it can be bought privately for £75 to £100 per month depending on the supplier.

It makes a huge difference, even for old timers like me, so I'd encourage you to look into it. There's a good book about it, Sugar Surfing by Stephen Ponder.

I was dx'd age 21, a bit older than your boy, and I'm doing fine 30 years later. I think my parents worry about it more than I do! Children are tough young critters - he'll find his own way of dealing with it.

Thank u Scott for your reply. I know it's early days (Have not slept for 3 days which probably does not help) will look into those books and certainly will ask the nurse tomorrow as to whether the sensor is available on the nhs. I live in Wales. My lad was upset last night, first night home from hospital, but seems not too bad this morning, hopefully things will get easier xx

 

[Scott-C]

One of the things I remember from my dx is that I went through a stage of feeling why me, why me, it's not fair, and people reassuring me that it'd all be fine didn't help any, I was like, how would you know.

So do be prepared for a few temper tantrums and anger - in many ways, it's a perfectly normal and understandable response, and looking back on it with hindsight, the best thing for the wellwishers to do would probably have been to back off and let it play out.

It doesn't last forever. It'll be fraught emotionally, but over time, the vast majority of us do come to terms with it.

I live in Wales.

I'm pretty sure Wales has a fairly liberal policy on prescribing libre but @Mel dCP might be able to confirm. Mel, what's the score with libre prescription in Wales?

There's simple ways of setting it up with a small transmitter on top so it'll send levels to remote phones so you can keep an eye on him when he's at school. It'll also ring the phone if levels go too low, which will reduce the burden of checking levels during the night.

 

[LooperCat]

Hi @Su3ieTom and welcome to the forum, sorry to hear of your lad’s T1 diagnosis. It’s a massive shock at any age (I was 24), and having a (non T1) son of the same age myself, I can only imagine some of the strops that may be happening over it. You do effectively go through the classic five stages of grief with this sort of diagnosis - denial, anger, bargaining, depression and finally acceptance. Not just him, but probably you as well. You’ll both get great support and ideas for how to cope here on the forum, perhaps you could encourage him to join up? @GlitterSparkles might be a good person to chat to, she’s a little younger but has only been diagnosed a few weeks herself.

As for the Libre, These are the Welsh guidelines, please forgive the scribbling!



They’ll probably want him to gain an understanding of managing his diabetes first, as the amount of data can be a bit overwhelming and you need to know which bits to act on. As @Scott-C says, the little transmitters you can buy to go with them are brilliant, the alarms are very reassuring and being able to read your level discretely on your watch is great when you don’t want to draw attention to yourself (something that really bothers my boy). My husband has an app on his phone which gives him an alarm if I drop very low, so he then knows to call for help if I don’t respond when he phones to check on me. You can self fund Libre, if you can’t get it prescribed - he may qualify for DLA (or the current equivalent- PIP?) which would cover the cost. Might be worth looking into?

There’s an awful lot to learn very quickly for all of you, but we’re here to help. No such thing as a stupid question! I’m in the Rhondda btw, croeso!