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.

We’ve been told we need to show that we are using less blood strips in order to keep the libre. Was only planning on using them before meals so we know how many carnbs to dose for. Maybe now for hypos too? I can’t see us being allowed to keep the libre to be honest. My daughters hba1c was in the 40’s but we were told this was good?

Yes 40's is between 5&7 in old money (which is how I work, sorry! It varies depending on which area you live silly really). The libre really isn't accurate enough to use to correct a high, looking at my previous examples if I had corrected for a reading of 13 when I was actually 11 then I would have had a hypo. I feel comfortable blousing from the libre reading if it is within the normal range otherwise I finger prick. This Facebook group is a good one to use to ask all your questions about it including the criteria for continued prescribing because, in all honesty, some hospital trusts are making up the rules as they go along

My husband has had type 1 for 33 years since age 2 and has no complications. And an amazing amount of control over his temper due to hypos, I'm in awe. He went to diabetes camps as a child which he says really helped with his independence if that's still an option.

40s is different scale to 6-7 so that's fine, don't worry.

DH doesn't use strips at all anymore with the libre apart from pre driving, we have just switched over to NHS funded after paying for it for years - and he is well controlled so I'm not sure if funding is improving? Was using 15 strips a day before the libre. He had a sensor until he got an iPhone 8. The adhesive is strong so oil helps it come off.

Can your diabetes nurse help you through the transition from one to the other?

Ah I see! Wondered how on earth we would get it to 6 when 40’s is hard enough. Sounds like you have fab control. We’ve never given a correction yet. Honeymoon period has been kind to us so I’m dreading it now we are coming out of it. I think someone said non - diabetics have an hba1c of around 45 so I’m pleased she’s in the 40’s. Just hope I can keep her there.

@hellotoyellow dvla now accept libre pre driving as long as it's above 5

I would say 20-41 is 'non diabetic' 41-48 is pre-diabetic and anything above will be a diagnosis of some sort. Anyway you're doing great. My parents literally didn't support me at all in it (I was 12). The most support I got was 'is your sugar level high??' If I ever complained of a headache. You've still got lots to work through (sick days, hot summer, exam stress all make things tricky) but you're so on the ball that you'll get there. I also use MyFitnessPal if I'm out and about and am not sure on the carb count of things it's usually pretty accurate.

Sorry I'm waffling

Three of my friends were/are diabetic. It was really useful to know what hypos looked like for each of them, and what we should do if one happened when they were out with us or staying over.

A funny story, my friend and I, on a school trip to Washington DC, nearly got kicked out of the Library of Congress for sitting on the floor whilst she tested and injected. Apparently this is seen as a protest, and not allowed! She told the security guard we were protesting the lack of seats or places to sit and manage her diabetes, and we (and a teacher) were led to the staff area. We though we were going to be told off and thrown out, but they brought us water, asked if she needed snacks, and apologised for the lack of provision.

My friends are all now in their 20's and appear to be doing much the same as my peers: working, dancing, playing sport, going on holiday, bringing up a step-family.

That’s good to hear that they are leading a normal life green - thank you.

Does anyone know much about the complications with feet at all? I don’t want to google! I saw someone on a page saying they check their little ones feet for sores etc. Is that something I should be doing and if so, why? I figured foot problems wouldn’t be for years from now and then only if they didn’t have good control of their bloods? Am I wrong?

That’s interesting wreck. They told us our aim is 50 but I am now going to see how it goes and see if we can aim for pre diabetic levels. I may be being naive tho as, like I said, we are only coming out of honeymoon period now, so don’t know how hard it is going to be.

You're not entirely wrong. People with diabetes can take longer to heal and that's why if there's a cut on a foot (which is likely to get missed) it's important to look after it keeping it clean etc. It's nothing to worry about really just something to be aware of. I don't have any food problems apart from extra hard skin which the podiatrist takes care of for me also if she were to get a verruca you're not supposed to use Bazuka but you can get something else which is possibly prescription only

So what could happen if we miss a cut / blister or something?

Greater chance of infection due to slower healing. It's not something I have ever experienced and I've had blisters etc from shoes but never any issues. I've had a sore from where I hit the side of the spin bike with my ankle and it's still there after a month but it's fine, just slow to heal

Ok. So I don’t need to start worrying about amputation at 7 then? 😢

Absolutely not! I've had diabetes for almost 20 years and haven't needed a single course of antibiotics for my feet and there have been times when my control hasn't always been great!

😅 phew. I was a little worried why I may need to check her feet already! Thanks.

You’re not alone. My son was diagnosed at just 13 and it dominated both our lives for the first 6 months while we adjusted. He got a self funded libre after 6 months which made it much easier to manage (cover with tegaderm, never had one fall off) then a pump 12 months after diagnosis which made life so much better as he can give small doses for snacks, seconds, corrections etc and suspend the basal if he’s going low.

He is nearly 17 now and has done bronze and silver DofE, been on two school trips abroad including flying, has got his provisional driving licence and is doing gold DofE alongside his A levels. Be kind to yourself in the early days (and later!), get a pump ASAP and change hospital if necessary and be prepared to fight for your child- the can do whatever they want but may well need rather more support to do it.

Type 1 diabetic here who was diagnosed at 18. To be honest it wasn’t great but also not the worse thing that happened to me that week (my dad died a week later).

I went to uni no problem, drank like a fish and did all the usual student partying and was absolutely fine. There was always that bit of me that knew how to deal with it and when I needed to eat and when I needed to inject. If I can do that having been diagnosed at 18 your DD will be fine.

I now have 2 kids after exceptionally healthy pregnancies, simple labours and deliveries, average birth weights and no issues after (well, my sugars crashed once when my eldest was 4 weeks old and when I collapsed , the only time in 18 years I’ve ever collapsed I ended up breaking my toe but hey, shit happens).

I know it seems like a lot now, but honestly she will fine. I eat like everyone else, drink like everyone else and live like everyone else. Once you have the hang of it it’s a perfectly manageable condition.

Those with the libre - it’s often quite out by about 4 mmols. That’s usually ok as I can guess roughly what she is. It’s a bit trickier when she’s lower as not sure if she’s hypo or not but seem to be ok at catching them at the moment. However anyone know why when the highest the scanner has had her the last couple of days is at 13 mmols the graph it shows you has her going up to 20 mmols. Is it guessing that she’s gone that high or is it wrong? Hate seeing the graph so high especially when her numbers haven’t been too bad. Thanks

You will find that if it's out of range it'll be less accurate. If you saw it was 13 then corrected it likely will have continued to go up until the correction dose took effect. The graph is more for showing patterns than anything. I know it's hard but try not to fixate too much on the numbers and concentrate on finding those patterns and looking back on reasons for specific spikes and lows.

Thanks. Will try. Hard to look at average glucose being 12.5 over the last week when it probably hasn’t been that high really but does worry me. Also the time in target says she’s only been in target for 20% of the time but obviously that’s not right either when it’s quite far out a lot. She’s currently 22 mmols. She is about an hour and a bit after breakfast so it’s her breakfast spike and the breakfast insulin should bring her down soon but how high is too high to spike after a meal? I hate seeing her so high. Do these meal spikes cause complications further down the line?

Only if it's continuously high for years. 22 is too high for a post breakfast spike, what did she have for breakfast? That's the first thing to look at. Secondly how long before eating is she injecting? Is it coming down to a 'normal' level and how long after? Which insulin is she on? Some work quicker than others. It's still early days for you both and there's lots to work out. I've had four hypos in the last 24 hours and no idea why

She had shredded and full fat milk, toast with tiny scraping of jam and a tube yogurt with some apple juice. We injected about 10 mins before food today. Have been doing longer but then sometimes ends up in a hypo or very close to one. She’s coming down to normal or v slightly high but not consistently high so the nurse doesn’t want to increase her novorapid. Increased her long lasting by half a unit and it resulted in night time hypos so we had to stop that.

I would put my bet on it being the Apple juice. Apple juice is used by lots of people to treat hypos because it's high in sugar and v fast working. That's not to say she can't have it just something (else!) to consider

This is the first time she’s had apple juice in a long time but she does normally have a fruit smoothie. I assume that would normally be the same? Poor thing. I hate telling her she can’t have stuff especially things like smoothies which are reasonably good for her.

There's a page on the diabetes uk website about fruit juice and smoothies. Worth a read. I tell my dc that it's bad for their teeth rather than making a big deal of it being high in sugar etc if that might help?

Thanks. I will have a look. Wish we could just go back to normal.