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T1 Parent Support Thread
10

NewishT1Mum · 18/09/2022 01:02

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.

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Cakeandcoffee93 · 18/09/2022 01:07

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

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Cakeandcoffee93 · 18/09/2022 01:08

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!

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NewishT1Mum · 18/09/2022 01:20

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.

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Beachysunsets · 20/09/2022 19:05

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?

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Cakeandcoffee93 · 22/09/2022 03:50

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!

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LostInTheColonies · 22/09/2022 04:42

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.

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Butterfly44 · 22/09/2022 08:28

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.

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Badatmostthings · 29/09/2022 18:00

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.

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Beachysunsets · 29/09/2022 19:18

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 💕

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Badatmostthings · 29/09/2022 20:46

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.

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