new diagnosed 12yr old daughter. type 1 diabetes

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rjm313

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hi all,
we are newly diagnosed. on day two, feeling very overwhelmed emotional and literally heart broken. her life has done a whole 360. I'm just not strong enough to see all the prodding and poking injecting. the carb counting is going right over my head at this moment and time. breaking down a few times a day. daughter is the same.
 
Welcome to the forum

It will be hard at first but it will get easier over time.

Type 1 won’t stop your daughter from doing anything.

Has you daughter been given a Libre?
 
Hi and welcome. My kid is now 12 and was 8 when diagnosed. Those first few weeks are rough! It will get easier I promise. Things like carb counting will become habit and you will hone your skills of looking at a plate of food and being able to have a good guess at the carbs but it takes practice. Be gentle with yourself to begin with. We found it useful to have a notebook to scribble down numbers but also to list regular foods so we didn’t have to do the same maths repeatedly (I still refer to it for dominos etc).

The emotional side takes a while for you and for her. Grieve the life you thought she would have. But also be confident that she can still do whatever she wants just with a few adjustments. There is very little in life that you can’t do with type 1.

You should get good support from your team in the early months. Use them. Use the psychologist for you as well as for her. Don’t be afraid to call them out of hours if you have concerns or questions.
 
It is a huge change initially @rjm313 and having to do all the practical things while trying to process this change is really hard. The only thing I can say is that it will gradually get easier. What seems overwhelming now will reduce to more of a nuisance, but a nuisance that you/she can live with.

When I was diagnosed almost 30 years ago, the idea was very much that it was a condition for life, but things have moved on so much now. We have much better technology - pumps and continuous glucose monitors, better knowledge and a much better idea of how a cure might be achieved.

All I can say is to pace yourself, be kind to yourself - and know that you’re not alone in this.
 
Welcome and sending (((HUGS))).

It is totally overwhelming at first and all the more so when it is a child, so please accept that how you are feeling is normal but it will gradually pass and you will all get used to this new way of life and as @Lily123 says, it shouldn't stop your daughter from doing anything she wants to once you all get to grips with it. We are incredibly lucky to live with diabetes in an age when technology is making our lives so much easier and hopefully continue to do so, so there will likely be even more amazing improvements in your daughter's lifetime. It is important to accept that there is a period of adjustment and it is very like grieving and has similar stages, but as with grieving, time eases it. So, have a cry every now and then if you need to. It is valid to feel like that. You will get through this and we will be here to support you.
 
Aww, bless you, it’s tough in the beginning isn’t it. Your head must be absolutely swimming with too much information, trying to process it all is hard. Try to deal with it one thing at a time. Get used to doing injections and blood tests first. Have plenty of glucose tablets/jelly babies/mini cans of coke handy in case of low blood sugar. Make use of the nurses - ours have always been fab and in the early days we were in touch with them a lot, if they are good nurses they don’t mind! Can you perhaps see a dietitian too to help with carb counting. It may all seem strange now but you’ll get the hang of it quickly. And if you need to have a cry, then do it, you do have to go through a grieving process. My daughter is 16 now, was diagnosed just over 10 years ago and it’s just a normal part of life for her now, she just gets on with it and I don‘t think she can really remember not having diabetes. There’s very little that you can’t do with diabetes, it just needs a bit more planning and a lot of clutter to carry around sometimes but you get used to it. So there’s no reason your daughter can’t carry on with her hobbies and seeing her friends and so on. You will have to speak to her school and get some sort of care plan in place, but hopefully the nurses can help with that. Good luck, and remember we’ve all been there before, no question is too stupid, so please do ask anything if you’re stuck 🙂
 
One of the people who has already assured you that it does honestly get easier as you get more familiar with it, is not all that much older than your daughter, but was diagnosed a bit younger too so has had a bit more time to consider such things.

I was 22 myself but suddenly remembered our Biology teacher at school showing us the scientific way to show there was starch in bread - he dripped iodine onto a crust of sliced bread - and it turned deep purple - oh very useful, like I can do that with my dinner ......... !

The NHS did tell us slightly useful things years ago though - eg that an egg sized boiled potato = 10 grams of carbohydrate - of course me being me, I laughed and asked whether that was a quail's egg or an ostriches egg? but was told no, it was a 'standard' hen's egg. I reckon that's now a 'large' hen's egg sort of size. (However, these days we probably hardly ever eat plain boiled spuds with a dinner - which is OK by me cos they are pretty boring, really)
 
hi all, thank you so much for your replies! it's really comforting to read. also feeling alot better today. we've made a list of the foods we usually have ect. discussed possible things like a libre and a pump. as my daughter has some additional needs such as ADHD more so poor short term working memory and lots of calculating and inputting data can become very overwhelming for her, but hopeful that we will find a way and this will become our new norm. any other tips and advice will be appreciated
 
rjm313 said:
hi all, thank you so much for your replies! it's really comforting to read. also feeling alot better today. we've made a list of the foods we usually have ect. discussed possible things like a libre and a pump. as my daughter has some additional needs such as ADHD more so poor short term working memory and lots of calculating and inputting data can become very overwhelming for her, but hopeful that we will find a way and this will become our new norm. any other tips and advice will be appreciated
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I found that there was a regression in how much I had to do for my son so I do most of the carb calculating (he’s much better at it now) and confirm he’s done his insulin etc. He’s still very independent and has always done his own injections and finger pricks but I’ve been part of the process of loading a strip into the meter or handing him the pricker etc so that it’s not all on him. Encouraging him to do as much as he can for his own diabetes is a priority but it’s a lot to do on their own so we take as much of the burden of that as we can.

We very much aim for ‘good enough’ and some days it will mean being very lax with targets but as long as basal gets done and some insulin goes in with food then it all works out - he’s now on pump and dexcom but for the first 2 years or so it was all finger pricks and injections.
 
oh yes, I was really worried about her independence. we had just got to a stage in life where she was able to do alot for herself. but hopefully once she has the other things like monitor and pump then she'll start to get back on track.
 
Welcome @rjm313
Sorry to read about your daughter's recent diagnosis. I remember it was difficult for me as an adult so I can imagine it is harder for a 12 year old. But as others have said, with some very tiny adaptations, it should not stop her doing what she wants going forward.
There is never a good time to be diagnosed with a chronic disease but today is better than 10 years ago. The technology is improving our lives hugely.
You mention you are struggling watching all the prodding and poking. To be honest, the fear of it is worse than the actual act. I barely feel injections and finger pricks because the needles are so small. It might be worth doing a finger prick test on yourself to see how it feels - the fear of the unknown is often the worse thing.

The last thing I will mention is how inspirational I find some of the people in the pubic eye with Type 1 diabetes. It brings me some comfort to know Type 1 diabetes doesn't have to hold me back from playing Rugby for my country like Henry Slade, from performing in an Internationally known band like Este Haim, becoming a famous actor like James Norton, becoming a stand up comedian like Ed Gamble. or even running the country like Theresa May did for a while (whatever you think about her politics, I am still inspired that she did not let diabetes stop her). Personally, I don't have the skill or drive for any of these careers but for a 12 year old it may be good to see other people "like her" making it big in the world.
 
thank you! really reassuring to hear. I can't wait to see her become independent again and strive to meet her goals

one other thing, wondering hoe long it took parents getting back in to work after diagnosis, how long did you requite off ? Work have been very understanding. also how do you deal with doing your own things while trying to still overlook your child? (sorry abit of a silly one)
 
rjm313 said:
thank you! really reassuring to hear. I can't wait to see her become independent again and strive to meet her goals

one other thing, wondering hoe long it took parents getting back in to work after diagnosis, how long did you requite off ? Work have been very understanding. also how do you deal with doing your own things while trying to still overlook your child? (sorry abit of a silly one)
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I work from home so it wasn’t too difficult to slot back into it. For the most part during the day we can work things over texts if we need to check in but there will be days where there have been night time hypos or other stuff where your daughter may not make it into school or may need to be collected from school so it may be that things go back to more or less normal fairly quickly but you find there are interruptions to the normal flow of the day. Your diabetes team will liaise with school and help with that management.

Honestly the first month or so is A LOT because everything is new. Like driving a car, it takes more concentration while you’re learning then your muscle memory takes over. You’ll soon get used to doing all the maths and adapting to highs and lows. It’s more that you may need to be instantly interruptible if there is a low rather than needing to be hovering over her shoulder all the time. We have a dexcom G6 and being able to see his numbers on my phone means I have to hassle him much less as I get alarms if he’s high or low and I can just look to see how his BG is without having to ask him to scan or anything.
 
I think my parents took 2 weeks off, I was 7 and the diabetes nurse did training for a few TAs at school and they were really good with it so my parents were not worrying while I was there
 
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