Anyone with a type 1 diabetic child / teen.

[Foodtheif]

We’ve been diagnosed around two months now and I’m still so upset about it. Normally could cry at any point within seconds. So worried for her future and how she will cope in her teens. Even though she seems ok with it at the moment and has accepted it, I feel I’m doing worse than she is. I’m also petrified that my older daughter will get it too.

@Confusedbeetle I'm not judging anyone but it is much more likely for things to go wrong when diabetes is mismanaged, and many people who manage it well live full and fairly normal lives - I'm giving the positives here to try to help a scared parent, rather than doom and gloom of what might happen to some people some times. Yes the risks are higher, that is why there is very regular monitoring and check ups to try to minimise the risks.

The only thing that my t1 friends (3/4 in a family) do differently is they go to the medical area at festivals to sort out the pump once or twice (need a clean area!) oh and flying means taking a drs note and information in the language of the country they are visiting, travel insurance they said wasn't much more than normal as it's controlled. They eat when and what they like, drink like fish (ok not a good quality!) and love life.

Foodthief did you manage to join the t1 group, the link I sent u?

Yes I did. Thank you for the link. I’ve not posted anything yet but I read through it now and again.

Just seen this

My DD is in her late 20s now, she was diagnosed nearly 20 yrs ago.

She has got on with her life..which has been difficult without the diabetes as she has a learning disability and epilepsy. She lives with her husband and they are expecting their first baby!

Tbh she had sailed through it all for the past 20 years...she does as she is told and still likes her treats. Blood sugars have been up and down but she has stabilized

I think I was more upset then here when she was diagnosed - hers was after a virus and like other PPs I am a nurse so I recognized the symptoms before they got bad.

Foodthief it is hard at the beginning but it is a journey.
I truly found out who my true friends were, which was hard but now I see it was best thing to happen.
I have realatives who have type one but never realised the true implications of what they lived with.
I mourned terribly for the life my daughter once had but three and half years in after all the ups and downs and learning curves i realised quite out the blue “I got this, I can do this”.
You just have to be positive and once you meet more type ones as you are out and about, you realise they are all amazing people. Really driven successful and leading great lives.
My daughter dances every day it has been a real difficult journey with all the exercise. Yes she has struggled to keep control. On the flip side she has performed on stage without me being there to help her many times since diagnosis, she has done Dof E, she has done amazing in school to spite her horrific attendance. She does sleep overs we are hosting one tomorrow.
Type ones are resilient people they have bad days but they are hardcore driven high performers. Don’t know why, but I have not met one yet that sees the bad in it all they concentrate on positives.
My daughter is a more driven person now than she ever was before if there is a positive to come out of the horrible situation this is it!
Keep going you are doing a great job xx

Thank you. My daughter is mostly a happy and cheerful little girl and I hope this carries on and she doesn’t let the diabetes get her down. It’s the unknown that worries me. I am dreading coming out of the honeymoon phase. It’s interesting that someone said it gets easier then as I was under the impression it gets harder. We are having a few lows this holiday which worries me. I guess when out of the honeymoon phase it would be more likely to get more highs? That will also worry me too 😂. What kind of age could your children start doing play dates again? Sleepovers? Just so hard that she can’t be left anywhere at the moment.

If she has hypo awareness and is able to test and treat a hypo, I would think that she could do a playdate without you there? Even without that, if you test her beforehand, give some carbs to try to make sure she doesn't go low, and you are close at hand, she should be able to go to a friend's for an hour or so? Before my son could carb count well, I would offer to send food for both children so I could work out the dose beforehand. He was able to self inject though (age 8). The honeymoon is a mixed blessing as the pancreas can intermittently produce random amounts of insulin, but on the other hand it is still working a bit so really high highs are less common. It's very individual. My son has a Dexcom cgm which continually transmits his BG to my phone, which makes sleepovers a lot easier (I can call to wake him if there is a problem). I wouldn't force independence on her too soon, but there are big incentives for her to learn some self-care so she can sometimes be out and about without you. I do still think it is important that anyone hosting my son knows that he has the condition, which unfortunately puts some people off, but at least that sorts the wheat from the chaff in terms of who is the sort of person we'd like to associate with.

Thanks. She doesn’t have hypo awareness. She did when first diagnosed but seems to have lost it. Is this normal? We’ve caught a few this Easter as she has been more active and she hasn’t had a clue she’s having them. She can’t prick herself easily either. She isn’t able to hold it and prick with one hand but it’s something to aim for. We’ve been told no to a cgm and can’t afford to pay for one either so we can’t get one at the moment. I do think it would allow her to gain some independence with me monitoring in the background though. May ask again at the next clinic.

If she has no hypo awareness then she should be considered for a cgm with alarm (like the Dexcom) although it depends clinic to clinic as to whether they are prepared to fund this. And they may want to see if the unawareness is a passing phase or not (it could well be).

If she is needing to be tested 8 or more times a day then she should, I think, be eligible for the Libre on the NHS. Not quite as good as a proper CGM but still really really helpful.

If your clinic are not being supportive, you are entitled to move clinics under patient choice. It is all a bit of a postcode lottery.

Also, after three months you can put in for DLA (and if you are not working I think you should be able to claim carers allowance). Lots of people use this money to fund a CGM, so this could be a possibility. She would need a compatible phone though.

It really is going to be ok. They grow so fast and learn so quickly and you will find a way to make all the things she wants to do happen for her.

There is hope on the horizon. My nephew as diagnosed at age 2 and is now a thriving 14 year old. He has the pump and deacon so he can control it all from his iPhone. He also trials the robotic pancreas every year at a diabetic summer camp run by the inventor and loves it. Each year they get closer to a cure

Was diagnosed at 18, I can honestly say it's been a positive thing for me. I've shaped my uni studies around diabetes research, hoping to continue this at postgrad - it really doesn't stop you from doing anything. It does come as a shock, but things are improving so quickly these days that diabetics can live whatever life they choose.

They’ve said no hypo awareness may be because she is still in the 3’s so doesn’t notice. We are pricking about 10 times a day at the moment due to the holidays but to be honest it’s prob more like 6 when at school unless we catch a hypo. Will be asking about them next time.

Probably don't read the below if you're feeling vulnerable and upset. But I think it's important to flag - especially due to the number of parents with young diabetic girls on this thread.

I don't think T1 Diabetes has to put limits on anybody's life. At all. But in my (admittedly only observed) experiences it can be totally devastating when combined with poor mental health.

One of my very close friends and one of my oldest daughter's friends both have a condition called Diabulimia. It doesn't get as much publicity and awareness as it should so, if you aren't aware, it's the most dangerous of eating disorders. Sufferers omit insulin which causes rapid weight loss. It often comes hand in hand with more traditional eating disorders but not always. For some people, if they're desperate enough to lose weight, they take little to no insulin at all which obviously has dire consequences that don't need spelling out. There is one small charity called DWED (Diabetics With Eating Disorders) which is doing incredible work relative to its size and funding but help for diabulimics and T1 diabetics with other eating disorders is pretty woeful - hospitals do a really bad job of managing the concurrent conditions.

As well as having diabulimia, bulimia and anorexia, my friend also has severe depression and anxiety which she attributes in part to her diabetes. She has severe eye, feet and liver damage. Of course it might all have happened to her anyway but I wonder if, with a bit more guidance and help to manage the diabetes when she was 8-12 years old, she might not have ended up in the desperate position she is in now.

I know most T1 diabetics have happy and healthy lives. I know there is no reason to think any of the children mentioned on this thread won't. But they are statistically at much more risk of mental health issues so it's worth knowing that they need that extra care and attention growing up.

These are the guidelines for prescribing Libre on NHS. www.england.nhs.uk/wp-content/uploads/2019/03/flash-glucose-monitoring-national-arrangements-funding-v1.1.pdf (Annex A) I would argue that if she is hypo unaware you are probably needing to prick >8 times a day. On waking, before meals and snacks and/or 2 hours post prandial, before during and after activity and possibly once in the night? And at any time a hypo is suspected by you, her and school staff. That makes 8 for most kids.

@manicinsomniac - yup there's a whole load of complexity and risk that people massively underestimate. It's hard for parents to find the balance between taking the condition seriously and trying to be positive/empower their children/minimise hyper vigilance.

@foodtheif you might enjoy this blog www.actuallymummy.co.uk/category/type-1-diabetes/

@Foodtheif if you are struggling to afford a libre or similar have you applied for DLA? Eldest son gets high rate which is £80 a week and other son gets middle rate which is £50ish a week so when they were first diagnosed so we used the DLA money to fund the libre scanners.

Thank you I will look at that blog later! I haven’t applied yet but need to do so. Does the money cover a monitor or do you need to add to it? I need it to cover the extra food / petrol and bits like that that I am noticing are really adding up now too.

Middle rate just about covers the cost of the Dexcom G6 but you'd need to fund a phone as well. If you are able to claim carers that will also help.

You can use her DLA to fund dexcom when you get it.

Hi all. We have qualified for a libre. Woohoo. (I think!) looking forward to not pricking her fingers up to 10 times a day! Bit worried about how she will cope with something attached to her tho. Worried it will come off in her sleep etc. Does it hurts when they come off? We may not have it for long as they need to see her hba1c come down. Well, it’s pretty low at the moment as she’s in her honeymoon period but she’s starting to come out of it now so her hba1c will start going up. Been warned they may take it off her although they will explain why. Just no guarantee and if they need to save money they will just say no. 😢 Anyone else’s child with the libre?

I have the libre. It is very sticky when you take it off so you can loosen it with olive oil. There's a freestyle libre users group on fb I suggest you joint. You can buy cool stickers to go over the top if you have a google, she might like that? I wear mine on the back of my arm otherwise you risk knocking it on doorways all the time. I've been in a sauna and steam room with mine plus pools and I haven't had any issues at all.

Word of warning. Don't get disheartening when it looks like a zig zag (see mine below ). It is accurate when you're within range but it gets less accurate the further out you are ie mine will say 10 when I'm 8 or 15 when I'm 12. It's great for patterns and amazing for nighttimes.

Have added a photo of a good day too oh I always scan on my phone, much prefer it to the reader, you can do this on the newer iPhones (Apple Pay ones) and androids (not sure which ones). If you want to use your phone and the reader you can

Yes I like the look of the good day more than the other. Hoping it doesn’t make me more worried having this! I think we’d have to have iPhone 7’s and unfortunately I’ve just got the iPhone 6 so we will have to use the scanner. I’m a bit gutted as I believe if I had the 7 (and she did too?) I’d be able to see her bloods on my phone?

Yes that's right. I think the important thing is not to overreact. If you scan the libre and see a reading of 9 leave it ten minutes and scan again as it could be back to normal next time. Only correct after finger pricking and always finger prick for hypos. That good one was after eating half a massive bar of chocolate the bad one is me having a really healthy day! Literally can't win sometimes but it is what it is and I'm just grateful for all the technology that allows me to do the best I can. I used to work in a drs surgery and people (usually type 2 actually) had hba1c's in double figures, mine is 6.3 at the moment but hoping to eventually get it under 6!