Any parents of children with type 1 diabetes willing to chat?

[T1mom]

I posted in children's health/ diabetes board previously but had no replies so trying chat instead.

Ds was recently diagnosed with T1 diabetes. The stress and worry is making me feel sick. Is there any other parents that want to chat?

His hospital team are great, but his insulin is all over the place and they are trying to gradually get it right, his CGM is beeping constantly with loads of hypos.

I just feel sick with worry all the time.

Just posting to bump this. I'm not a parent of a diabetic child, but I have T1D myself. It sounds like you’re doing well and unfortunately it's just the process of getting used to having diabetes.

I would suggest perhaps giving insulin after eating, because kids can be so variable in how much they eat. And for the time being, maybe having plainer meals with just one starchy carbohydrate source, e.g. meat with vegetables and potatoes, rather than pasta.

It's great that you've got a sensor, is your child a candidate for a pump? That can make things somewhat easier. Hope things improve soon.

Morning! Im a fellow T1D mum (although my DS may be a bit older at 19) but he was diagnosed at 16 if you want to chat im around. Just for info, he started on a sensor and pen but was shortly put on a pump which has been a game changer! xxx

Welcome to the club no one ever wants to be a member of!

I can promise you this will get better. My child has been diagnosed around 3 years now, has a pump with connected CGM (which is even more standard practice than it was in the relatively short time ago that they were diagnosed) and the difference it makes is unbelievable. Some people seem to be unlucky with sensors and sets falling off but we thankfully aren’t.

Im not saying it’s like they’re not diabetic but I definitely don’t need to think about it as much as I did. Nights are still tricky and I don’t foresee a time where we won’t wake up to check BG overnight, I can’t risk an overnight hypo that could end badly. I’ll never rely on the current technology enough to sleep through the night.

Feel free to pm me ANYTIME!!!

I promise you’ll be feeling loads better even a few more months down the line.

Thanks all.
He can't get a pump until we're about 6 months in, so were a bit away from that yet.

I can't believe how life changing this is when its something I had never considered before!

I agree re the sensor, I find it very hard to trust it at night time. I know the readings are reasonable right but I worry that the alarm will fail and not alert us.

How does everyone manage exercise? We've had so many hypos this week and I know exercise can play a part in this. But hes very active and has pe or some kind of sport most days, so I hope we can figure this out.

When on pens we were always told a 10g snack with no insulin if BG below 7 I’m sure but double check that.

If lots of hypos long acting insulin may need to be reduced but the nurses will be all over this and you’ll see improvements very quickly.

Its wild how much of a big deal T1D is and it can be so frustrating when people are very blase about it but one word of advice is to try to not let anything anyone else says about it get to you because there is just no point. Let people be ignorant and just focus on your child. Easier said than done at times! Especially on here.

Can’t recommend a Sugar Pixel device enough. The alarms would wake the dead, it has been a complete game changer for us.

Son has one at school too so they can check his blood sugars at a glance. My son is only 6 though so if yours is at secondary that wouldn’t be relevant.

It does get easier. Pump, when you get one will help. But the diagnosis is life changing and unless you’ve lived with it few people understand the impact on the entire family.

Hopefully you have a good diabetes team, talk to them as much as possible. Hang in there 😬

I have a T1D child, diagnosed 4 years ago, and then I was diagnosed as T1D about a year ago.

T1D is so personal, everyone is different in how they react to insulin and sugar for hypos. The good news is that children get so much support which is consistent up to them turning 18, as different ages and life events have an impact on their care needs.

The diabetes team should support with enabling school care and making sure a EHCP is in place too. My daughter’s team wouldn’t let her go back to school until it was in place.

I will say that the pump was a life changer for my daughter, and took some of the headache of calculating her insulin to carb headaches away. We’re now just at the point of learning new rules around driving.

The T1D community is amazing and supportive, there are some excellent support groups on both Facebook and Reddit.

I know it’s all new and scary right now, I know how panicky it can be with Hypos in the middle of the night, be kind to yourself and make sure you look after yourself too!

Around exercise, it works well if you have carbs first, such as a protein bar or isotonic sports drinks. We found certain exercise made the hypos worse compared to others! But the isotonic drinks were a life saver. Not sure what CGM you are using, but the Dexcom used to let you set alarms for different things so you can catch the hypo before it goes too low when exercising

Thanks all.

He has sports again this evening, I'll try the isotonic drink before and half way through. Hes been having carbs but not fast carbs for sport, so maybe this will help.

It feels like the knock on effect of doing sports is massive at the minute.

His diabetes team are fantastic, I just wish we could move things faster. Hes back to school and they are also doing ok.

Hes 12 and has asd so on one hand is responsible and super interested in learnimg about it, but on the other hand can be disorganised.

Some protein with the carbs before sport can be good to help keep the BG up so think small ham or cheese sandwich rather than biscuits.

Funnily enough my child could do sport all day and be fine but just walking eg round a shopping centre is a guaranteed low.

Both my daughters have T1, diagnosed at 10 but are now 19 and 23. Youngest is particularly sporty having played roller hockey then ice hockey, and still does so. She used to reduce her night time insulin if she had a big game the next day, but it’s much easier with the pump now. Trouble is you never know if stress will send it up or down, or hormones, or having a crap sleep etc etc. It’s just such a guessing game.

Hey there, if you are up for some independent research take a look at Dr Andrew Koutnik online he is type 1 himself and advocates for a low carb approach to reducing the need insulin. It might not be suitable for everyone, but it is something to think about. Especially if you are worried about over night, making the last meal of the day low carb might be an option.

I will not be drawn into an argument about it but I’m really not sure how helpful that is for the parent of a newly diagnosed child.

Yes its the unpredictability of it all!

School made him sit out of a sport activity yesterday 😡 despite signing an exercise management plan which says the child should not be discouraged from doing physical activity. His reading was fine at the time so I really don't understand their reasoning.

Sport went fine yesterday evening, no alerts during it. He had half a lucozade sport before and half 30 mins through. This definitely worked better than crackers or flapjack!

The dietician changed his ratios by a good bit so hopefully we start to see the effect of that today.

And finally, we all slept through with no night time wakings, so today feels like a glorious day. Although I know now that nothing is predictable about this and if we do the same thing today, we could still be awake all night tonight.

Hope everyone else has a good Friday. Thanks again for the words of wisdom when I needed them yesterday.