Does anyone else have lots of support from the doctors and yet their type 1 sems uncontrollable

[ReluctantScientist]

My 13 year olds type 1 is so bad it is a result if he can attend school 3 days a week, currently my oldest son now works 7 days a week to support us while I treat Leos diabetes and monitor him through the night, this was impossible whilst I worked, we are on the waiting list for a pump, and have tried everything bar changing insulin types

 

[EllieM]

My 13 year olds type 1 is so bad it is a result if he can attend school 3 days a week, currently my oldest son now works 7 days a week to support us while I treat Leos diabetes and monitor him through the night, this was impossible whilst I worked, we are on the waiting list for a pump, and have tried everything bar changing insulin types

So sorry you're having such a difficult time. Welcome to the forums.

Does "lots of support " include a cgm (continuous glucose monitor). If you have one of these it may be possible to ease up on the blood tests at night and give you both a rest. (If they are giving you a libre than there is a third party product which allows it to transmit alerts.)

Speaking as a long term diabetic (diagnosed at 8) I didn't get a glucometer till I was 20, and I'm sure I ran too high in my teens (very few hypos) but at least I got to sleep at night.

If you describe your issues (brittle diabetes???) then some of the folk on the forum may be able to make suggestions. Teenage years are particularly difficult as puberty can lead to drastic changes in insulin needs....

 

[ReluctantScientist]

Yes he has a CGM and support from the NHS, we are at the stage where I am learning Cpf1, I already have the basic knowledge of CAS9, I have built a workshop and full class 3 bio-containment facility in my garden, I have the tools and skills now to modify human DNA, I am learning the law so as to stay within it, both Leo and I are learning a different language each from a country where DNA laws might suit us, I can build a CGM from scratch, I am fairly close to being able to build a pump, and I can ignore copyright and produce 7 litres of Insulin a week obviously we are constrained by the law and I love Scotland and do not wish to move, Leos diabetic control was perfect until he hit 12 years old, we have tried diet, split regimes, basal changes etc. Leo rarely gets much sleep and it interferes massively with his schooling, and I am trying to figure out if anybody else out there has type 1, and meticulous protocols to manage it and a lot of trained medical support all to no avail

 

[Juicyj]

Hello and welcome @ReluctantScientist

How long has your son been diagnosed type 1 ? Has it always been bad and what issues are you facing with his control ?

 

[Juicyj]

Hello @ReluctantScientist i'm tagging @tim2000s for his technical knowledge as he has built a closed loop pancreas system, so would be a useful contact for you.

As you can appreciate hormones impact on insulin sensitivity so with growth spurts this can turn a balancing act into an impossible past time.

Can you give us some idea what his daily readings look like, what insulin he's using, what cgm he's using ? Have you discussed pump funding with his team ? Have you tried doing any basal fasting tests ?

 

[LooperCat]

I am trying to figure out if anybody else out there has type 1, and meticulous protocols to manage it

Sorry you’re finding things so hard. Puberty is a tough time with all those hormones. I manage mine pretty meticulously with a DIY artificial pancreas system and a low carb diet. Happy to chat.