Hi Parents

[Jayden2407]

Hi
My daughter was diagnosed last September ,she is 7. Some good days and some bad days like everyone really, she has been amazing though and does her own finger pricks and insulin while at school (she will at home to but is usually to busy to want to bother with it). Casie is using the libre sensor , unfortunately it's not on prescription in our area, she used to be aware of hypos in the begining but not much now, having the libre really helps. Its also helped in recognising patterns and what foods affect her the most and on the whole (other than special occasions ect) bed time highs have stopped and casie can have a stable night...... Just to stop the post breakfast high and crash now haha all fun .

Sounds like you and your son have managed to get a handle on things early well done. X

Hi, aw that’s great I really need to look in to the Libre, is it around £150 a month? Is that the one?

Casie sounds like she’s doing great too, it’s such a relief that they are willing to do their own injections and finger pricks isn’t it, Jayden does as me on the off occasion to do his bolas which I’m happy to do.

Thank you, we’ve still got lots to learn, I’m sure it’s a life long learning process xx

 

[Jmeechan]

Hello,
I’m just wondering how many parents with children that are type 1 are on here?

How are you both coping/dealing with things?

Just reaching out to other parents in my situation and would be great to discuss My son, Jayden was diagnosed 8 weeks ago.

Janelle

Hi my son was diagnosed at 14 he is now 16. I’m still finding it extremely hard, every child is different I suppose but my son has good and bad days! Today has been a bad day as had check up and his HbA1c has crept up to 10, always been in the safe range of 7, he has put on HbA1c pathway so they are keeping a closer eye on him. It’s so difficult as they get older as you want them to have their independence but at the same time you still need to be on top of it. Some days you try to tell yourself it’s all good and your on top of then you realise they are not being completely compliant and you feel so guilty, telling yourself it’s your fault should be doing more to make sure he is injecting but you can’t be with them 24/7. I still have days a think why has happened to my boy and how crawl life can be, you have to be positive I know and most of the time I am but some days I get so angry and sad it just makes you so helpless.

 

[Jayden2407]

Hi my son was diagnosed at 14 he is now 16. I’m still finding it extremely hard, every child is different I suppose but my son has good and bad days! Today has been a bad day as had check up and his HbA1c has crept up to 10, always been in the safe range of 7, he has put on HbA1c pathway so they are keeping a closer eye on him. It’s so difficult as they get older as you want them to have their independence but at the same time you still need to be on top of it. Some days you try to tell yourself it’s all good and your on top of then you realise they are not being completely compliant and you feel so guilty, telling yourself it’s your fault should be doing more to make sure he is injecting but you can’t be with them 24/7. I still have days a think why has happened to my boy and how crawl life can be, you have to be positive I know and most of the time I am but some days I get so angry and sad it just makes you so helpless.

Hi,

Yes I totally get those days, anger is something that creeps up on me with my sons diagnosis, it used to happen more often than now because as you say you have to stay positive.
Being diagnosed as a teen would be harder as they’ve already hit those years doing/eating normal things like their friends do then to have diabetes thrown in the mix I can imagine it would be tough.

I have thought a lot about it as he’s getting older and I’m kind of glad he was diagnosed in primary school. He starts high school in the morning and I am worried about his control as I can’t just ring him like I’ve done over the holidays to make sure he’s done his injections. All though on the plus side he has taken to it quite well being diagnosed at 10 years old. Has your son left school now? How was his HBA1c now?
I hope those good days out do the bad for your sons future. Try not to feel guilty as at 16, I would be reminding my son of the risks when he’s older with poor control.
Take care,
Janelle

 

[Shaz1208]

Hi,

Yes the clinic advertise family days for T1’s but with my son just turning 11 he won’t be up for doing things like that unfortunately!

It was more for me to speak to other parents in my situation, I have told my son I’m on here and hopefully he’ll get on himself in the next few years

It’s a shame actually because it sounds really fun!! thank you

Hi. My son just turned 12 and started senior school. Just less than a year since diagnosis. He never wants to go to the groups that are run but I make him and say it’s not just him but me that needs to ask questions. He always enjoys it in the end. He won’t have a pump but he does have the Libre.

 

[Shaz1208]

Hi, aw that’s great I really need to look in to the Libre, is it around £150 a month? Is that the one?

Casie sounds like she’s doing great too, it’s such a relief that they are willing to do their own injections and finger pricks isn’t it, Jayden does as me on the off occasion to do his bolas which I’m happy to do.

Thank you, we’ve still got lots to learn, I’m sure it’s a life long learning process xx

If you have to self fund then look into the Dexcom G6 as this is a CGM and not a Flash monitor like the Libre.
My son has the Libre which is funded but I am looking into the G6 as the benefits are greater.

 

[porl69]

If you have to self fund then look into the Dexcom G6 as this is a CGM and not a Flash monitor like the Libre.
My son has the Libre which is funded but I am looking into the G6 as the benefits are greater.

Hi, you can always turn the Libre into a CGM. https://miaomiao.cool/ A few type 1's on here have it. I will tag @Mel dCP to come and explain more. I am going to be ordering 1 in the not to distant future. It may be worth looking into

 

[LooperCat]

If you have to self fund then look into the Dexcom G6 as this is a CGM and not a Flash monitor like the Libre.
My son has the Libre which is funded but I am looking into the G6 as the benefits are greater.

I have a Libre + MiaoMiao, which makes it just as functional as the Dex. Alarms set for whenever and whatever levels you want, and the ability to push data to your watch is fantastic. If you’ve already got Libre on prescription (I do), it’s well worth the ~£160.

 

[Colin of Kent]

Here's a shout for the xDrip+ with Blucon Nightrider, which I've been using for several months now. It's a fantastic setup with alarms and predictions, etc. @Scott-C is the expert on it. Basically, if you've got Libre on prescription, then the Blucon is yours for a one-off cost of £130ish, then your phone becomes your CGM.

 

[db89]

Here's a shout for the xDrip+ with Blucon Nightrider, which I've been using for several months now. It's a fantastic setup with alarms and predictions, etc. @Scott-C is the expert on it. Basically, if you've got Libre on prescription, then the Blucon is yours for a one-off cost of £130ish, then your phone becomes your CGM.

I'm seeing more value in it every day as my Libre sensor drifts further and further from where my levels are actually at so I fully agree with the Blucon/Miaomiao suggestions. Out of interest, what method are you using to keep the Blucon attached to the Libre?

 

[Colin of Kent]

Hypafix. As recommended by another forum member. One roll lasts many months. Comfortable to wear, I don't know it's there most of the time.

 

[db89]

So you just stick that straight over the top and take it off if it's going to get wet? I have one of those 3D printed straps but it dug into my skin around the Blucon so I had to stick a square of Rock Tape over the Libre. I was concerned about sticking something over both of them in case it ripped the sensor out whenever I need to remove it.

 

[Colin of Kent]

So you just stick that straight over the top and take it off if it's going to get wet? I have one of those 3D printed straps but it dug into my skin around the Blucon so I had to stick a square of Rock Tape over the Libre. I was concerned about sticking something over both of them in case it ripped the sensor out whenever I need to remove it.

Yeah, what I do is lay the Blucon on a flat surface, take the backing off the tape, put the tape on the Blucon so it's central, then place them together onto the Libre sensor, and stick down the 'wings' of tape.

 

[Jayden2407]

If you have to self fund then look into the Dexcom G6 as this is a CGM and not a Flash monitor like the Libre.
My son has the Libre which is funded but I am looking into the G6 as the benefits are greater.

Thank you