My DIL has just been diagnosed with type 1 diabetes. Any advice?

[MirandaGoshawk]

She is 22 & had been feeling unwell recently & peeing a lot. Had a hospital appointment yesterday when they told her. I saw about the book 'How to think like a pancreas' by Gary Scheiner so I'll recommend that, but I would love to be able to say to her "It'll be OK". Will it?

I know type 1s who have type 1 grandkids it sometimes misses a generation. I also know type 1s with type 1 kids.

waitingforsunday is the poster who’s obsessed with her dc developing her T1. At one point, she was giving here child regular fingerprick tests even though they’d shown no sign of T1.

She then posted a thread in a similar vein to her posts on here hinting that her dc had been diagnosed with T1 but when recognised from previous threads and questioned about when her dc had been diagnosed, disappeared.

“I actually think clinics should be making people more aware of the risks and perhaps advising t1s not to have children, but that's another story...”

I do NOT agree with that.
Yes I get really fed up with my diabetes sometimes. But at least I’m here. Alive. I’m sure my children would ‘manage’ if they became diabetic. Better than not existing at all, for them, as a choice, one would assume.

When are the research/trial results due? Let’s hope they provide some clarification.

Yes well we have it in two generations so I guess for us the risks are higher and I wish someone had made us aware.
Re my daughter we have been referred to a paediatric diabetologist by the GP after I spoke to the dsn who subsequently contacted the GP. No it isn't happening fast but t1 doesn't always happen fast until symptomatic. Yes I have stopped checking her myself because it wasn't achieving anything and I know it wasn't fair.
T1 as an adult isn't so bad because at least you understand what's happening. For example due to hormones my sugars went up last night to 13.7. I corrected very gently but two hours later I was at 4 and dropping. I had 0.2u and it caused that drop. I then had to get up and treat the low and wait for it to come up and then make sure it wasn't going to go too high. Four hours I was up in total. That isn't unusual for me at some points of the month.

Trial net is ongoing. I think they have funding for a while yet and in some areas are running prevention trials for children over 6 who are antibody positive. They are using a drug usually used to treat arthritis. It doesn't actually prevent t1 but slows down the progression from antibodies to abnormal blood sugars.

I don't mean to offend anyone. It's just my opinion that people should be made aware of the risks - I guess particularly where it is already in more than one generation which doesn't apply to your daughter in law - of passing it on.
It has reduced my quality of life by at least 50%. Who wants that for their kids?

15 thoughts that go through my brain, as soon as I open my eyes in the morning:

Am I low?
Can I physically get out of bed?
Is my Dh here, (just in case) or am I in charge of ds’s?
Have I gone low in the night?
Can I be bothered to go downstairs and get my testing kit right now, or can I lie here for a few more minutes....

Other thoughts that I have to think, each day.

So this is how it works. Last night my son's BG suddenly shot up to 18 from 5 after he'd gone to bed. He came down to me and he changed his pump site (put a new cannula in) just in case that was the problem. He then came down again because he was still shooting up and we agreed how much extra insulin he was going to take. I went to bed and set my alarm for every two hours, got up, and chucked in more insulin (above his normal dose) every couple of hours. This morning, he got up, tested his blood, took insulin for his breakfast and set a timer on his phone for 15 minutes. He did his cello practice while waiting for the insulin to take effect. We all piled into the car but he ripped his (fairly new) cannula site out on his pump tubing while putting his cello in the boot. Back in for another set change. At school, I guessed what snacks he might need for hockey at 9am. I based this on the cold weather and the duration of the session, but it was a guess because he hasn't played hockey for a while and his insulin needs have nearly doubled in the past month because he is having a growth spurt. He does a blood test before, during and after sport which helps. Meanwhile, I went through the new menus for the week to work out how many carbs in each item and adjust his dose for what sport or playtime activities he has for the week and emailed them to school. After he'd had his snacks, school told me he was sitting a nationwide maths challenge at 9.30 so a) hockey was cut short and b) hockey was indoors anyway. I told them he'd need to take more insulin. Unfortunately this didn't happen so he sat the test while high which will have affected his cognitive ability.

BUT, this is all BLAH BLAH BLAH nuisance to him. His priority is "did I score in hockey" and "have I done well enough to get silver or gold on the maths - rather than last year's bronze". It's all crap, takes up a lot of time and can be dangerous (without the testing or snack he could have had a seizure during hockey for example). But it's not really the point of his existence, and to say, effectively, that he would be better off not existing is frankly horrific.

The world would be a poorer place without my sporty/cello playing mathematician.

OP, your DIL will need lots of support. It is a very serious and grinding condition. But it will be OK and she shouldn't change any life plans on the basis of this diagnosis.

Thanks t1mum3. I've been told I'm eligible for a medal but to be honest I'm trying to de clutter not add to it!
I suppose I'm just looking at the developments there have been in my lifetime and am optimistic for the future. Meanwhile the best I can do is to KOKO. (Keep on keeping on)

This just popped up in my twitter feed blogs.diabetes.org.uk/?p=9561&utm_source=twitter&utm_medium=social-media&utm_campaign=blogs&utm_term=pregnancyanddiabetes&utm_content=organic

They don't specify the risk though - they just say small increased risk. But 1 in 25 vs 1 in 300 seems quite a big increased risk to me.
It's a personal decision really. I mean I've had children myself and I was aware there was an increased risk but I wasn't aware how much higher the risk was because of having multiple generations already.
I just wish it had been spelt out to me because I would either have not had them or probably only had one.

It skipped a generation in my family and I know some T1's who don't have anyone else, to their knowledge, who have had it in their families.

My DP has been T1 since age 9 and honestly he feels like it hardly effects his life. He injects after he eats, and he eats whatever he wants, and that’s it. In the 5 years I’ve known him he hasn’t had a single full blown hypo. If he’s too low, he eats something, if he’s too high he injects. Worst thing is some grumpiness when he’s low.

Paperdoll, that is good to hear. I know 2 people similar.

Two men in fact, I know, one it doesn't seem to affect that badly. One, the husband of my best friends friend.

the other man, I met on a DAFNE course, he cycles up mountains, climbs Kilimanjaro...
He was astonished at my pump download. Said my ' dawn phenomenon' was the worst he'd ever seen.

I've had too many hypos to count. I've been in hospital, surveyed, by the top consultants in the world. 3 of them. Fascinated by my 'un-pattern-less'. great. I go low on a tuesday at 2pm, I go low on a Wednesday at 2pm, but on a thursday, despite being monitored and a test done every 3 minutes, .... poof, I'm sky high. My diabetes is so 'brittle'.

My consultant says I'm one of the most fascinating cases she's met and she's been my consultant for nearly 15 years now.

Doesn't provide me with much comfort. I assure you. I've had the best in the world monitor me and they still cant control me. I don't tick the boxes. Quite frustrating.

Many people with cancer - cancer is different for each. Autism is different. Spectrum. One autistic child is not the same as another. Diabetes is the same. Spectrum.

I have a theory that men can an easier ride - at least once they are adults and growth hormones have stopped.
My sugars are so affected by hormones throughout the month. I have two completely different doses and it suddenly switches overnight pretty well.

I also get different results doing the same things on different days. It drives me crazy.

Sorry I haven't been back to you all - other stuff going on! Thank you all, you are awesome!

tell her to join FB groups for Diabetes 1 sufferers, my DD finds them very helpful.