T1 Parent Support Thread

[NewishT1Mum]

Feeling a bit down tonight as I sit next to my child while they eat toast that they don’t want to try and prevent a hypo. It just seems so unfair.

I know there’s much worse out there but this is just so relentless and you can never be off guard. The weight of keeping them safe and healthy is so heavy.

Sorry if I missed a thread but thought it might be useful to have somewhere to vent/share support etc.

Oh bless you. I have type one diabetes- I’m 29 and I’ve had it 8 years. I know the mental struggle myself and I couldn’t bare the thought of managing a child with it. Some days are great- others not so.
It does become a part of routine after a bit- do you have the freestyle libre to check sugars? It’s so much easier and predictable.
There is a great book on Amazon from a mum who’s son has type one and some awesome low carb recipes.
also not sure if it’s helpful but two men have brought a book out called mastering diabetes and they’ve had it since youth. They’ve got some great advice- I tried the diet and my blood sugars where a steady 6 all day. No rollercoaster blood sugars at all.
you’re doing a great job- it is a worrying thing to have but one day your child will grow up and manage it themselves and what you do now sets them for life. It’s more than independence! Xxx

Also I have lots of juice boxes in the fridge and next to my bed Incase I dip- and biscuits. Before bed. I always make sure I’m between 8-10 before bed so I know it’s probably gonna be steady. If it’s dropping a lot during night I’d adjust background insulin obviously after speaking to doctor. I usually reduce 2 units. But yeah it is a battle!

Thank you for your kind reply.

We have the Libre yes it has cut out a huge number of finger pricks. That must have been life changing for you when you got it if you had been finger pricking for years!

I’ll check out those books thanks, I’ve not read any books about T1 yet but I definitely should. I need to know as much as I can. A 6 all day sounds very impressive. Goals!

The thought of actually giving away the control when my child grows up is really scary too!

Blood was 9ish before bed around 9pm and just over 4 now hence the toast. We’ve just reduced the long acting but if things don’t become a bit more stable at night we might need to take it down again. Poor thing hasn’t had a full, unbroken nights sleep since diagnosis. I feel so guilty and just wish this hadn’t happened.

Oh OP I feel you I really do 💐 How old is your DC and when was diagnosis? My DS is very nearly 15 and will have been diagnosed 18 months on his birthday. Relentless is really the right word for it. We had a run of 2am stubborn hypos last week and it’s so exhausting for them and for us. Are you on a pump or MDI?

i feel you on the broken nights sleep! Now I have a three year old too. It’s chaos sometimes like now I’m having a hypo but I learn not to panic and ride it out after juice. It’s the predictability after a bit. Have you heard of the different stages hormone wise that can affect blood sugars during the night? I always find recently at 3;30am I’m up with a hypo- I either need extra before bed or less background lantus.
ghe books will come in handy- the recipes for the low carb one are amazing and her son had it when he was around 8 and they prep every week- let me know how you get on!

Another T1 parent here - also with a house laden with juice boxes and small packets of sweets. DD (13) was diagnosed 4 years ago - big shock; none in the family. I knew something was up but had no idea what so actually finding out what was going on rather than thinking I was losing my marbles was a very good thing (probably wouldn't have been so relieved if I'd known what was involved!).

We started finger-pricking, then used a libre, then libre with miaomiao, and now she uses a dexcom with a pump and tech that allows the dexcom to speak directly to the pump to (try to) prevent highs and lows. For peace-of-mind, this tech is just amazing. Better for both kids & parents. Dexcom is funded in the UK I think? (not in the UK and not funded here!!)

You're so right about the burden of keeping them as healthy as possible, combined with not enough sleep, especially in the early days. You don't say when your child was diagnosed, but it does get easier. It really does.

There are a lot of support forums for parents on Facebook, which are fantastic. I'd definitely recommend joining. No one truly understands apart from others going through the same.

Hello, my son was diagnosed at 5 and has just started high school. He's reluctant to start on the new tech so still finger pricks and injects. He has tried the libre but the application hurt too much and has put him off completely. Insulin injections in his upper arms tend to hurt too. Does anyone know if the dexcom would hurt less? I suppose it's a tricky one to answer as these things are very subjective. On the whole he's been great at getting on with things but I'm dreading the teenage years.

Hi @Badatmostthings . My son has only been diagnosed 18 months but he has fully embraced the tech. He will be 15 next month and he feels the dexcom and pump definitely help him “blend in”. The dexcom hurts him a little on application and for about 10 minutes after while it settles but then there are 10 days of plain sailing with it. We find it much more reliable than the Libre and also less likely to come off. He was hating the insulin injections too as he was so skinny it really stung, the omnipod has been a game changer for him and he’s put on some really good, healthy weight being able to snack etc. Do you have a supportive DSN who could go through all his options with him? It’s really tough for them when they just want to do what everyone else is doing and not stand out 💕

Hi, yes his DSN and consultant are fab and are adopting a softly softly approach with him as they are of the opinion he will do this in his own time. Tbh He does everything in his own time but once he makes a decision he doesn't look back so hopefully it will be the case here too. Ironically the thought of having something attached to him makes him feel he would stand out, he swims competitively and plays water polo so his body is on show a lot. Having said that he has spotted CGMs on other kids at galas and matches so hopefully that normalises it for him.

Not a T1 parent but I can attest that Dexcom insertion is nothing like Libre (IMO anyway). I find finger pricking absolutely hideous.

Hmm. Aged 49, Type 1 since aged 1.5, so 47+ years. Been on a Medtronic pump for 18 years. Have had Medtronic cgm, and dexcom, but not atm. Libre2. I'm sure bad's ds will embrace the tech when he's ready.

We used to get emla on prescription to numb the area before dexcom insertions which might be an option.

Anyone still around? I also have a T1 DS and while I like the FB forums I also like the idea of somewhere anonymous to post. DS is 14 and was diagnosed 18 months ago. Our time in range spans between 21% (a particularly bad day with a cold and a pod failure this week) and 95% (very rarely) and everywhere in between. We have tried low carb but he is really not up for it and I don’t want to make him any more resentful of it than he already is.

I'm up - I'm in NZ 😁
DD (13) was dx just before her 9th birthday so we're 4.5 years in.

Currently using a Tslim pump & dexcom. Prone to snacks that are denied... We've never had 24 hours in range. She did really well while we were away over Xmas - lots of days over 90% in range - but has been with her F for a few weeks so it's all gone to shit.
We try to aim for lower - but not really low - carb. Much easier to keep her in range that way.
It's so hard!!

Time in range not great here! Was fantastic first couple of months but has really gone down.

Time in range really hit and miss here too. Whenever we get disheartened our dsn really drives it home how difficult this is to manage during puberty. We’ve all had Covid for the first time this week which really hasn’t helped matters 🙈

@NewishT1Mum I wonder if ratios need to be reviewed? Things seem to change so frequently with teens! We've found control-IQ to really help DD. Omnipod isn't available here at all...

Horrendous day of numbers here. Hyper followed by hypo and now going back through the roof as had pasty at the church quiz evening. All bolused for of course but we just never seem to get it quite right. Still other than that it has been a happy day. How is everyone else?

3 months on here from my 8 year old getting diagnosed, so still getting used to this new rollercoaster we are now on. A week of highs after weeks of hypos.

Can’t seem to get a balance.

Hi, I’m type 1 since 2015 (diagnosed in my early 20s), if there’s anything you want to ask me, please do 💐

I would much rather have diabetes than be the parent of a child with diabetes if that makes sense. The worry must be awful.

My DS is 18 and was diagnosed 7 months ago at 17. Big shock for us as no family history and it's been a crappy time to be diagnosed as he wants to go drinking and has to navigate that minefield as a newly diagnosed diabetic. He also had to cancel his driving test due to being in hospital through diagnosis and has waited forever for a new date (very soon!) but then I will have the worry of him driving with low blood sugar and all that malarkey.
His schooling had taken a battering (diagnosed at end of year 12) and he's scraping through his A Levels. Silver lining is that he's been offered unconditional uni places which I think may be contextual offers based on his diabetes?
All in all it's been a bloody roller coaster and I cannot imagine having a small child with this. Hats off to any parents of little ones with Type 1, you are amazing.

Sorry you’ve found yourself in a position to join this thread but hopefully there will be some brains to pick and some good advice to be found. My DS is 15 and we’ll be 2 years in in April. Its a rollercoaster and I’m not sure it necessarily gets easier but it does become a new normal of carb counting, insulin ratios and basal adjustments so quickly that it does become less overwhelming eventually 💐

Hi there - how is everyone? We’ve had a good weekend numbers-wise and have found that cheese on toast or a cheese toastie is like a miracle food for holding numbers steady. Just thought I would pass that on! Obviously DS has now had something slightly less stable at school as he is 14.3 arrows up 😣