New Parent looking for some help/info

[Bonoscot]

Hi I'm a father of 4 children, 14, 6 ,3 ,1.

My daughter of 6 was diagnosed in January this year T1...Body blow for everyone.

She has been doing well with her bloods and up until recently was in the Green overall.

We had our first sick days recently and she ended up in hospital with some fluids as she wasn't keeping anything down at all.Everything seems ok now though and she is back out after only 24 hrs.Seems to be on the mend.

I was looking into a monitoring system that could tell me in advance of her blood readings and send the readings to maybe a device that would beep if she was about to go into a hypo,or hyper......like a warning system. I don't know much about these but hear there is a few out there...I'm looking for recommendations. I understand these can be expensive but I just want the best for by girl and to help us all even moreso

Being young she doesn't really know that much about what's going on but is going with the flow.As a parent though I'm struggling myself,i been utterly heartbroken since she was diagnosed but don't show it around any of the family,being a father that cant take this away from her is eating me up inside. The positive side to this is that its made me even more of a family man to all my children.....but I do go way on my own sometimes and get upset about all this...Eveyrthing about this frightens me,something that ive never felt much in my life...so I just want to do the best that helps my girl throughout these younger years at the moment.

People state this does get easier,especially when they get older as they are aware of their Carb intake more and maybe a hypo on its way....but I just have to focus on just now and want to do the best for her.


Thank You for any help

 

[ringi]

This impressed me with what was possible.

 

[catapillar]

@Bonoscot you want either a dexcom G5 or a guardian connect (although I'm not sure whether medtronic are able to take on new customers at the moment as they were having serious problems with availability of their sensors). Both systems would require your daughter to have an iphone on her all the time.

The bold terms are the things you should stick in google to find out more and see if either of those fit the bill for your daughter.

 

[Deleted Account]

The monitoring systems you are talking about are called Continuous Glucose Meters (CGM). These are not currently available on the NHS unless there is a specific problem.
These can be set to send alerts when her BG is low, high or changing too fast.

You may also read about the Libre - this has just been approved by NICE but I have not heard of anyone that has had one on prescription.
The Libre makes taking readings much much easier and provides a history which allows you to see the trend when you take a reading (e.g. is the latest reading higher or lower than the last reading). This does not provide the alerts - unless you add some tech, you only see the results when you "swipe" the sensor.

 

[Bonoscot]

Thank you....I been reading up about the Libre,sounds great however it doesn't alarm if in hypo.

The Dexcom apparently does do this and also runs with a program called Nightscout (I think)....Anyone use the Dexcom g5 in a child? Do the sensors last long and how much are they to replace? Its to stop the worrying of her at school and out with friends and also night time checking

 

[Grumpy ole thing]

Hi @Bonoscot , You could ask your diabetes nurse or GP whether they think your daughter might meet the criteria for a CGM? Your local Clinical Commissioning Group will have set the criteria at which they will fund a CGM, and your clinician will be able to send an Individual Funding Request (IFR) to them if she meets the criteria. Your CCG is determined by your GP, and you can find this out from Google. You might find that the Libre can be offered by secondary care (hospital care), and part of the criteria might be that you know how to interpret and react to the results; an example of this might be if you have taken a "structured educational course" like DAFNE. Sorry, none of these are definites, its all dependant on what's available in your area. If you would like more help please feel free to let me know. I hope all goes well, it must be really hard for you. I can assure you that it will get easier x

 

[himtoo]

hi there @Bonoscot
welcome to the forum !
i was totally sad to read your opening post and diagnosis of your 6 year old daughter
she is young enough to take it in her stride -- but as parents you must be devastated for her !!
sending big hugs to the whole fsamily

definitely have a word with the DSN ( Diabetic Nurse ) regarding all possibilities for glucose monitoring.

I am tagging in my esteemed colleague @tim2000s for his knowledge and understanding of glucose monitoring.

 

[CathP]

Hi,

I’m sorry to hear about your daughter. My 6 year old daughter was dx 2 years ago at 4 years old, it’s a terrible shock. You’re right (in my opinion!) in looking into cgm, as a family we’ve found it life changing. We started self-funding dexcom g4 along side nightscout (to provide remote monitoring) shortly after dx. We then managed to get nhs funding this year, and have recently upgraded to g5, which allows remote remonitoring without xdrip/nightscout. NICE guidelines state that hypo unaware children should have access to cgm, but it’s very dependent on area at the moment. Luckily here in Wales more recent guidance means that cgms are being willingly funded. It’s definitely worth fighting for. I also think self-funding is worth while though, for safety, sanity and sleep.

Best wishes.