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

(40 Posts)
MirandaGoshawk Tue 07-Nov-17 11:28:04

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?

Orangebird69 Tue 07-Nov-17 11:33:25

Yes, it will! A friend of mine was diagnosed as type 1 when she was 8 (over 35 years ago). Your dil will need to think a bit about what she eats/drinks but only in regard to moderation. Nothing needs to be totally avoided. A good routine with blood sugar checks etc is essential but the kit available these days to check and administer insulin is just incredible. So advanced from the days of sitting in the school loos and stabbing her thigh with a needle! All the best to her flowers

CourtneyLoveIsMySpiritAnimal Tue 07-Nov-17 11:43:45

Yes it will, eventually. But it is hard work especially in the beginning (sorry, probably not what you wanted to hear).

Things have advanced a lot though, even since my dd was diagnosed 7 years ago. If there’s any chance of her getting a pump or even one of the new glucose sensors, it will make life a lot easier.

niccyb Tue 07-Nov-17 20:26:32

Your daughter in law will be closely monitored for a while and I expect she will be under a specialist team. She can eat whatever she wants. It’s completely different to that of type 2 diabetes.
There is a course known as DAFNE which stands for dose adjustment for normal eating which teaches how to match the insulin to he amount of carbohydrates so the pancreas book will not help as it may give conflicting advice. Patients who are on an insulin pump usually have had to attend the DAFNE course and should apply the DAFNE principles when using their insulin pump. The pump doesn’t do the maths for them. They have to enter how they want it to administer the insulin.
All patients with type 1 diabetes are offered the option to attend the course. Those who are unable to attend are offered carbohydrate counting courses.
I would leave it up to her specialist team. She will be fine. It is just a lot to take in and to adjust to especially at first and can be overwhelming.

MirandaGoshawk Wed 08-Nov-17 10:58:54

Thank you all. Thanks for that info niccy, I haven't wanted to intrude/bombard her with questions so that's very useful.xx

cherrycola2004 Wed 08-Nov-17 15:26:34

I’m type 1 got when I was 17 had it 16.5 years think like a pancreas is an amazing book. My bible!

WaitingForSunday17 Sat 11-Nov-17 11:37:41

It's pretty depressing to be honest.
It's 24/7 and you treat it with a drug that kills you if you misjudge it.
In some ways it has improved in terms of management tools but in others the fact that you are now linked to a cgm or pump all the time means you can never ever forget about it.
It's a bit relentless.

WaitingForSunday17 Sat 11-Nov-17 11:42:56

Also any future children she may have - if she wants children - will have a 1 in 25 chance of developing t1 diabetes.

Somersetter Sat 11-Nov-17 11:47:44

It's really really important to manage it well to avoid serious health problems in future.

There's good advice on the NHS website:
www.nhs.uk/conditions/type-1-diabetes/living-with/

If she smokes it's really important to stop now. It's easy to feel invincible in your 20s and not make some of the lifestyle adjustments but it's really important for long-term health. flowers

t1mum3 Sat 11-Nov-17 22:41:40

Think like a pancreas is a great book. Unfortunately she may not be offered the courses and care that niccyb describes so she may need to stamp her foot very hard. Successful management of type one is very much driven by the PWD educating themselves. It's a challenging road ahead but she sounds like she has a thoughtful MIL. She should also be aware that type one is classified as a disability so she can ask for some reasonable adjustments at college or work. The diabetes.org.uk (NOT co.uk) and jdrf.org.uk websites may be of great help.

Somersetter Sat 11-Nov-17 22:58:51

Sorry I overdid the "really importants" in my post blush

t1mum3 Sun 12-Nov-17 08:26:26

@Waitingforsunday17 I think the risk is lower for offspring if a) it is the mother rather than the father with T1D and b) if the parent is diagnosed at a later age. I don't think this should be something that the OP's DIL (or the OP) should be worrying about now. In any case, 5% is at the higher end of estimates for offspring. Total risk in the general population is around 0.3%.

WaitingForSunday17 Sun 12-Nov-17 08:58:42

It is but it's still 2-4%.
It's 4-6% if it is the father.

I just wish it was something I'd been made more aware of because no one ever made it clear to me, the odds still sound low but when you think 1 in 50 or 1 in 25 it's not that low and personally I think it is a risk I should not have taken. It's just personal choice I suppose. I do know other type 1s who have children who have not developed t1, yet anyway.
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...

Silvergran68 Sun 12-Nov-17 09:35:08

I was 15 when first diagnosed and am now 71. I've gone from glass syringes to insulin pens, much easier, and urine testing in a a test tube to self-funding the free-style libre to give a break from finger prick blood tests. I also have 2, now adult, children neither of whom have shown signs of diabetes.
It's a lot to take on board at the beginning and I second everyone recommending the DAFNE course.
Take your lead from her when serving food. It's easier for her to put portions on her own plate than to have to leave served up portions because they're too much for her. If she chooses to take a slice of cake or a biscuit don't ask her if she's allowed that or express surprise. I was told from the beginning to eat what I wanted albeit within limitations, and that was in the days of food exchanges being worked out on calculating equivalents of slices of bread!
No, it's not an easy road to follow and there are times and circumstances which still get me down, but then the alternative is worse! Good luck to all of you!

Silvergran68 Sun 12-Nov-17 09:35:09

I was 15 when first diagnosed and am now 71. I've gone from glass syringes to insulin pens, much easier, and urine testing in a a test tube to self-funding the free-style libre to give a break from finger prick blood tests. I also have 2, now adult, children neither of whom have shown signs of diabetes.
It's a lot to take on board at the beginning and I second everyone recommending the DAFNE course.
Take your lead from her when serving food. It's easier for her to put portions on her own plate than to have to leave served up portions because they're too much for her. If she chooses to take a slice of cake or a biscuit don't ask her if she's allowed that or express surprise. I was told from the beginning to eat what I wanted albeit within limitations, and that was in the days of food exchanges being worked out on calculating equivalents of slices of bread!
No, it's not an easy road to follow and there are times and circumstances which still get me down, but then the alternative is worse! Good luck to all of you!

CleopatraCatLover Sun 12-Nov-17 16:47:28

I'm also T1, it is relentless and often feel I just want a day off from it. You're dil could do the online equivalent of the DAFNE, I believe it is called BERTIE. Carbs and Cals do a book and app with pictures of meals and carb contents. The best way of managing this beast is to carb count.
As mentioned above the free style libre is very helpful.
It's such a big adjustment and a lot to get your head around, but she will get there.

WaitingForSunday17 Sun 12-Nov-17 16:49:32

God can you imagine a day off? It'd be brilliant! Even harder the next day going back to it though.
Never used to get me down so much but it really is at the moment.

t1mum3 Sun 12-Nov-17 16:54:32

@waitingforsunday17 I understand what you are saying. But I know my son would rather exist with T1D than not exist. I would give anything to take it away from him but I can't wish I'd never had him. As someone with a parent with hashimotos, my dc have a higher risk of autoimmune conditions like T1D. I didn't know this when I had them, but I don't think it would have been wrong to go ahead and have children knowing that they had a 1 in 150 rather than a 1 in 300 chance of T1D. Where do you draw the line? I get what you mean about informed choice but I don't agree with doctors advising people with T1D not to have kids when there is 95% chance they won't get it.

t1mum3 Sun 12-Nov-17 16:56:31

@silvergran68 56 years! That's awesome. Do you have your Joslin Medal?

WaitingForSunday17 Sun 12-Nov-17 17:00:21

I just think that the reason it is on the increase is because there must be lots more people with the genetic predisposition to it. Years ago t1 people either didn't live long enough to have children or they just didn't have them because they weren't well enough so didn't pass the genetic link on.
Now lots of t1 people have children and I think this is leading to a massive increase in the number of cases.
It worries me in regard to my children as the NHS is unlikely to exist in ten, twenty years time. They would have to fund the medication they are life dependent on themselves.
1 in 150 is still low risk. I feel like 1 in 25 isn't really and that's why I wish clinics would advise about it. Had I been told that my risk was around that due to t1 in multiple generations I would likely not have had children.
With the trial net study going on it may be that more precise risk statistics and risk factors are discovered.

Oblomov17 Sun 12-Nov-17 17:20:06

The relentlessness wears you down. Majorly. It’s all consuming.

I’m mid 40’s, T1 since aged 1. Neither of my ds’s have it, yet. I know no other T1 whose children have it, so the post from pp re %’s is questionable. Kind of offensive really. Last thing I’d be worrying about, at her age of diagnosis. How about just coming to terms with it first?! hmm
Probably easier for me, I never knew anything else. harder at teenage? With hormones already.

Hope local support and online BDA will help her. I like those sites and talking about developments in islet therapy, New pancreas etc. Tell her to log in.

Oblomov17 Sun 12-Nov-17 17:30:57

Waves at t1mum3, who I see from time to time on such diabetes threads...... smileglitterball

t1mum3 Sun 12-Nov-17 18:05:56

Waving back at you @Oblomov17 smile

Trippy4 Sun 12-Nov-17 18:08:53

Tell her it will be okay . It is tough and annoyingly misunderstood by some usually through ignorance not malice but with support she can thrive .Adult care can be very variable so it might be worth encouraging her to join support groups there are plenty on Twitter and Facebook .

t1mum3 Sun 12-Nov-17 18:51:07

If she is on twitter and looks under the hashtag #gbdoc there is a strong community there

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