Does living with T1 ever get "easier"?

[Feteaccompli]

My 11yr old DD was diagnosed last week after being taken into hospital with constant thirst/tiredness/peeing, which I now know are the classic symptoms of T1D.

We were able to come home after 3 days but since then it has felt like an avalanche of information and medical equipment has hit us.

Every single meal feels like maths homework. Every time DD is hungry I worry about what she should eat as she just wants carby foods all the time. She's been so hungry since we got discharged. Her glucose levels are up and down a lot so we haven't got dosing right yet. I feel like all I do is Google and doom scroll about diabetes online.

DD is going back to school on Monday and I'm worried how she will cope there. She just wants to go back to how she was last month before all this happened.

When does it get easier? When does carb counting become normal and not take ages before every meal? When do glucose levels stabilise?

Hospital were lovely and looked after us really well. The clinic staff we are now seeing are also lovely but they are only open Mon to Fri 9am to 5pm and at our last appointment they said it was too soon for any clear patterns yet.

I guess I just feel really overwhelmed right now and need some hope.

Yes it does. My son was diagnosed at 9. At primary he was embarrassed and wanted to be like everyone else. By teens he was more confident, his mates all knew and it was no big deal. Technology has really helped make it easier he has a pump and continuous glucose monitor which automates a lot of it. The tech is moving on really fast. Uni years and alcohol were tricky to navigate sometimes. It’s never something they don’t have to think about but he can mostly guess fairly accurately the insulin he needs and if he gets it wrong the tech alerts him and partially adjusts his dose automatically if he goes low. A good book is called ‘diabetes through the looking glass’ which explains diabetes from your child’s perspective. Even though it’s still an extra thing he has to think about it hasn’t stopped him travelling or doing anything in life. They will want you to learn how to do things manually first as that’s always your back up but ask about pumps and cgm as they are game changers.

My son was diagnosed as Type 1 13 months ago. He is an adult though, in his late 30s. It was an absolute life changing blow and still difficult to comprehend that this is him for the rest of his life.

So I totally empathise with how overwhelming it must be for you OP.

We have commented a few times how lucky it is that he is really good at maths - has a degree in it actually - because as you say every meal involves maths and it must be really really difficult for some people.

He has had tremendous support from the NHS diabetes team and yes, a year on, and he is in a much better place. His diabetes is still a big feature in his everyday life - he misses the fact he has lost spontaneity from his life because everything has to be planned now - but he is back to doing things which seemed impossible at first. He is back to running and has done 10ks and is training for a half marathon. He is playing badminton and he is socialising with his friends, although generally he avoids alcohol.

So yes things will get better for your DD and yourself OP. Take all the support that is offered to you.

It will get easier. My son was diagnosed T1 10 years ago. To begin with it was a maze of counting carbs and working things out but now he just does his insulin without barely thinking about it.

The only issue he has is when he visits a hot country on holiday as his levels seem to be all over the place.

I was diagnosed with T1 at 45. It’s totally overwhelming at first but I promise you do get to a point where carb counting and correction doses come naturally to you. Glucose levels won’t ‘stabilise’ though and you need to cut yourself some slack over the highs and lows that will always occur as being a pancreas isn’t easy! But the fluctuations/actions to take become easier to manage.
is she on injections at the moment? (I do think it’s a good idea to start off on injections) a pump and a CGM will make things easier but carb counting (for now! Tech is ever evolving ) will still be needed.
there are apps where you can take a photo of your food and it will tell you the carbs (carbs and cals)
for now concentrate on working out what her ratios are/correction factors. This will come with time. Don’t be hard on yourself. In a years time you will know more about your daughters diabetes than any medical professional.
do you have a local branch of diabetes uk? We have an informal what’s app group for support.

Thank you all. Its good to hear it isn't so bad a few years on.

At the moment we are carb counting, doing multiple injections and finger prick tests. Trying to teach DD to do the tests and injections herself so that she can manage when she's back at school. She can do the finger prick but really struggling with the injections. Looking at the needle is freaking her out every time.

I feel so bad for her as she just wants to go to school, go to her clubs and be with her friends. She has a big audition for music coming up in 2 weeks and a week long residential trip at Easter with her orchestra and I think we'll have to pull her out of it all which will be devastating.

Why pull her out?! She might be managing a bit better - is it possible to stay nearby for the residential to help her if needed or speak to the adults involved.

I will speak to the organisers but I guess I'm trying to prepare for the worst and manage expectations.

Based on what the school have said (that I'd need to be PVG checked to help with e.g. a school trip) then I assumed they wouldn't let me stay on site overnight, so DC would probably have to stay with me somewhere else which would take away a lot of the fun of being in a dorm with other kids for a week.

I know it's early days still but we've had a few overnight hypos this week and have had to wake her up and give some juice so that would be a worry if she was away from home.

I also have a younger DC to factor in somehow!

I taught a girl of a similar age with T1 and her parents found a local support group very useful so there may be one in your area.
My son was a bit older when he was diagnosed and preferred to do things on his own.

We've not been told of any local support groups for younger age children, only for older teens.

DD keeps having night time hypos. She had 2 last night and already had one this evening. She is staying up late because she's hungry and wants to eat supper, but then going hypo a couple of hours later. I don't know if the lack of sleep is making her more prone to go hypo or if she's eating the wrong things. We gave her porridge as I thought oats would be good slow release energy overnight but it doesn't seem to have worked.

I'm getting more and more worried for her going back to school tomorrow and now thinking its too soon. She really wants to go in and just feel "normal" again.

@Feteaccompli just to point out that T1 is recognised as a disability and is typically covered by the 2010 Equality Act. As such, your DD's school is required by law to make reasonable adjustments for her condition. While staff cannot be obliged to administer insulin injections, supplying glucose tabs/fruit juice/any other hypo treatment could well be considered 'reasonable' .

Some schools are not aware of their obligations and are only too happy to help once these are pointed out. Others, sadly, can be less helpful and attempt to push back, but the option of saying 'we cant cope, so your DD can't come' - well, it's not as simple as that.

The school have been quite helpful but she is having to go out of lessons every hour or so due ongoing hypo frequently. School are making her treat hypos if she is going below 5.0 because they seem really scared of her becoming unwell. I understand the fear but she's having to go to the medical room 4 or 5 times a day which is very disruptive.

She also keeps going hypo at night around 11pm or midnight. This is after eating a big dinner and a decent supper (porridge) which I don't understand. It's so stressful and I can't sleep after the glucose alarm goes off its like having a newborn baby waking up all night except I have no time off work to cope.

She’s getting too much insulin if she keeps getting hypos. Talk with her diabetic nurse but ease back on the dosage. You may be calculating incorrectly the dosage needed for the amount of carbs.
I was diagnosed while pregnant (initially as GD but I was put on insulin right away) but it didn’t go away after I gave birth. I don’t count carbs now as I’m used to what dose I need. But even so, I do get the occasional hypo or high reading, as it’s not just what you eat but so many other factors. It’s a learning curve and with all the hormonal changes to come fur your DD through adolescence it will be tricky for the next few years but it’s just routine for me now.
I am following the Eledon trials with interest!

Hi Fete,
I was where you were last year. My 11 year old son was diagnosed last year. I was so thrown and everything was so overwhelming. I promise you it does get easier. Its still a huge part of our lives but its so much more manageable.

When you get a CGM and then a pump it will really help. The constant finger pricking is so exhausting and invasive. We never sent my son to bed below 6 and if we foud he was going low we gave him a 10g snack with no insulin before bed like a small banana. Your team will advise you.

Also, she should be able to treat hypos at her desk. No need for the medical room.

Absolutely terrible timing with the residential trip but I would try my hardest to still allow her to do it. Otherwise she has solid proof of how diabetes is wrecking her life. Even if I had to farm out the younger children and sleep in the hotel. To be honest I was going to sleep outside a friends house to allow a sleepover.

Its so hard, its overwhelming and please expect to be sad and angry. You are grieving the life you thought your child would have. There are some excellent Facebook groups for parents that will give great support.

Good luck. You've got this.

She might be experiencing a 'honeymoon' period (its called that but is totally misnamed imo) where the pancreas continues to produce some insulin. It can be rather random and obviously makes tight control very difficult. Hang in there, it will pass.

Agree strongly with PP, your DD should not have to leave class every time she is starting to go low - she should be allowed juice and/or sweets at her desk, whether she prefers haribo or jelly babies or glucose tabs etc. Have you asked the school why she needs to go to the medical room? This is something definitely worth gently pushing back on.

The school won't allow needles in the classroom so she has to go to the medical room to collect her kit to do finger prick tests. She is allowed back to the class to eat snacks but as she's already had to leave to get her testing kit its not that useful.

She has been given a Dexcom but it seems to under read compared to the finger prick tests. We have only had 1 so far so maybe the next one will calibrate better and match the blood results more closely? If school just went off the dexcom she would have had to stop for juice or sweets practically every hour the last 2 days. We could deal with it if it was more predictable but it seems all over the place and no day is the same even if she eats the same snacks and lunch. Her dexcom chart is like a rollercoaster!

This is the last 24hrs rollercoaster and previous days have been similarly all over the place

Yeah the school doesn't get to decide that. That's potentially illegal. She should be allowed her blood testing equipment with her in class, that would almost certainly be deemed a reasonable adjustment under the 2010 Equality Act. Assuming you are in england, school rules do not supercede the law of the land, so what the school wants to happen is neither here nor there really.

Also she should not be walking alone to the medical room if her sugars are dropping as that is likely to make them drop even faster! Guidance on this is very clear.

Sounds like the school doesn't have any prior experience of T1. I'm not suggesting you go in all guns blazing, but it seems that a little education (!) May be required.

Not allowing her testing equipment in the classroom is ridiculous. If (when she is much more accustomed to it) she feels like her blood sugar is going low she needs to be able to test straightaway, not have to wander to the medical room.

Oats are a fast sugar release for me. Like faster than a mars bar. I’m not diabetic but my ex is and I spent a lot of time helping investigate the GI index of different foods including wearing a continuous glucose monitor myself.

Adding fat or protein to carbs will slow the glucose action in general

The school has had T1 pupils before but not newly diagnosed ones apparently. They had some training from our diabetes clinic before DD was allowed back to school.

I will ask if her testing kit can stay with her in the classroom.

There are unfortunately some well known troublemakers in her class (a whole different story but relevant in the teacher's decisions around risk) who I can imagine would try and cause disruption if she got her lancet and blood strips out at her desk.