Parent Nightmare!

[Mrs Crusty]

Hi, I’m new here. My healthy 11 year old son was diagnosed T1 in July three days after his birthday after becoming sick and hospitalised with DKA. I feel now that the initial shock is lifting that I’m almost grieving for the care-free life he had ahead of him! He starts secondary school in September too which is a big enough life change to deal with. I’ts hard to get my head around it all, especially as he’s always been so fit and well to this point! Why is life so cruel? Thankfully he’s dealing with it very well so far but I wish with all my heart he didn’t have to!

 

[Thebearcametoo]

Hi and welcome. It’s a huge shock to begin with and the first few months you will be in a head spin but it does get easier for him and for you.
My daughter is 10 and was diagnosed 18 months ago. She’s fit and healthy and was back doing everything she’d done before diagnosis (before lockdown hit and lots of things stopped).
Your diabetes team will work closely with the school in getting them up to speed. If he’s a sporty kid that will be great for his long term health and there’s no reason why he can’t continue. Again your team will work with you on managing sport and diabetes.

We’re here for all the ups and downs and to support you as well as him.

One thing to talk to your team about in the next few months is what the funding for a pump is like in your area - here it’s automatic funding up to 12 and then it can take a bit of creativity after that. If it’s the same in your area then it’s something to bear in mind given his age. It doesn’t mean you need to rush but you will need to start the process a few months before his 12th birthday.

 

[Mrs Crusty]

Thank you. Yes, it has been a head spin you’re right about that! I’m exhausted just trying to take onboard all the information let alone process it all!
I’ve not had chance to look at the pump situation but I’ll ask our nurse when she calls later. It appears to be a good option for kids to gain a little more freedom so we’ll definitely look into it. We went for our first bike ride a week ago since his diagnosis, planned everything, extra carbs before starting etc etc just like we’ve been told and in 20 minutes he’d plummeted! Scared the hell out of me and worries me how he’ll manage it at school himself in September. Our team are great so I know they’ll help but it’s just having to let him go off to school where it’s down to him to take responsibility without having me there and knowing he’ll be ok. Not normally a paranoid mother but it’s scary!

 

[Barbie1]

Hi Mrs Crusty, and sorry to hear about your son. I too was diagnosed at age 11, and that was over 50 years ago, and I can honestly say I have so far had a happy, active and virtually care free life.

It is just (Ha, listen to her, “just“!) a matter of becoming a little more organised, but that will only come with time and experience. And the help of all the other parents on this forum of course.
The bike ride experience was in my view good. You need to work out what effect exercise has on his BS and that needs to be a very personal matter, we are all different. And I have to say, in my case, a lot depends on the level before even starting the exercise, and then you factor in how much energy you will be expending. But as I say, it will come with trial and error, nobody gets it right instantly!

I'm sure you and he will cope - just another of life’s little challenges. Best of luck!

 

[Mrs Crusty]

Thanks, it’s nice to hear from someone who has lived with this. I know he’ll do ok, just wish he didn’t have to but we’re in it together so we’ll be ok. The exercise does worry me, think that will take a bit of getting used to. He’s coping much better than I am, that’s for sure. Couldn’t be more proud of him!

 

[Thebearcametoo]

Your team will help you fine tune exercise. Don’t be afraid to email or call them with specific queries.

 

[trophywench]

Hiya - are you adjusting doses yourself yet? Or is he still on fixed amounts of both sorts of insulin? Just so we know when suggesting things, which actual insulins is he using?

By the way - grieving is absolutely the correct terminology - it really is that - so don't be at all phased should you or he suddenly burst into tears or have a fit of blind rage for no apparent reason out of the blue. That, very similarly to the words 'You'll get used to it' - is 100% true even though I know very well you find that impossible to believe just now.

Look after yourself as well as your son. {{{Hugs}}} to you both.

 

[Mrs Crusty]

We’ve been adjusting and carb counting with Novorapid since day one! So that’s been an education in itself but I’m an organiser so the first thing I did was weigh, calculate and spreadsheet everything he likes, our family meals, meals out, snacks etc etc. Its printed out and I keep adding to it as we go so I have a quick reference to help calculate each of his meals. Been a bit of effort but it also means he can use it himself easily and so can my husband when I’m not about!
The first few days were hard as I was triple checking and second guessing myself over everything in case I messed up, but its easier now and I feel more comfortable with it all.
Just such a huge amount of information, do’s and don’t and variables to contend with isn’t there? Thankfully my son isn’t a picky eater and took control with his testing and injecting straight away or I think I’d be even more of a mess! X

 

[trophywench]

Good for him !! Very pleased to hear that.

Are/were you a data analyser or statistician - or just the family member who's had to learn to remember everyone's everything when going on holiday? Now in my 2nd marriage and I was utterly gobsmacked to start living with a bloke who knew exactly what he wanted and needed to take on holiday with him and packed the night before we were going if not the next morning.

 

[Lisa66]

Hi, welcome to the forum.

I’m another diagnosed at 11, over 40 years ago. Like @Barbie1 I would say I’ve had a pretty normal, happy and active life. Diabetes hasn’t stopped me travelling, playing sport or anything really that I can think of, it all just takes a little extra planning.

You have understandably been knocked sideways by your sons diagnosis and will have been overwhelmed by all the information put in front of you, so it’s no surprise that you are worried. It sounds like your son is doing really well, but as a mum you are bound to worry it’s what we do diabetes related or not. As others have and will say, it does get easier and everything will become second nature, honestly it will....I’m not saying there won’t be a few hiccups along the way, but that’s life and we all learn from these.

As well as being on a massive learning curve, many things can effect blood sugar levels, so if things go a bit awry from time to time and you can’t work out why, don’t beat yourselves up...we are all always tweaking and learning. It’s important to live a normal life with diabetes toddling along and fitting in with us, not the other way round.

Has a Libre sensor been mentioned to you? Fantastic little bit of kit for seeing what happening with levels...especially helpful for sport. Worth asking your team about this.

Lots of parents on the forum who have been in your shoes and as you have already seen, are very happy to help. You’ll be helping other new parents before you know it.🙂

 

[Mrs Crusty]

Good for him !! Very pleased to hear that.

Are/were you a data analyser or statistician - or just the family member who's had to learn to remember everyone's everything when going on holiday? Now in my 2nd marriage and I was utterly gobsmacked to start living with a bloke who knew exactly what he wanted and needed to take on holiday with him and packed the night before we were going if not the next morning.

I’m just not good if things aren’t organised, always been the same. Chaos causes me stress so I like to stay in control, lists for everything and if it’s not in my diary it’s not happening!

 

[Mrs Crusty]

Hi, welcome to the forum.

I’m another diagnosed at 11, over 40 years ago. Like @Barbie1 I would say I’ve had a pretty normal, happy and active life. Diabetes hasn’t stopped me travelling, playing sport or anything really that I can think of, it all just takes a little extra planning.

You have understandably been knocked sideways by your sons diagnosis and will have been overwhelmed by all the information put in front of you, so it’s no surprise that you are worried. It sounds like your son is doing really well, but as a mum you are bound to worry it’s what we do diabetes related or not. As others have and will say, it does get easier and everything will become second nature, honestly it will....I’m not saying there won’t be a few hiccups along the way, but that’s life and we all learn from these.

As well as being on a massive learning curve, many things can effect blood sugar levels, so if things go a bit awry from time to time and you can’t work out why, don’t beat yourselves up...we are all always tweaking and learning. It’s important to live a normal life with diabetes toddling along and fitting in with us, not the other way round.

Has a Libre sensor been mentioned to you? Fantastic little bit of kit for seeing what happening with levels...especially helpful for sport. Worth asking your team about this.

Lots of parents on the forum who have been in your shoes and as you have already seen, are very happy to help. You’ll be helping other new parents before you know it.🙂

Seen a bit about the Libretto and pumps but not really looked yet, but we will do.
At the moment we’re battling with the heat!!!!!

 

[Thebearcametoo]

I’m just not good if things aren’t organised, always been the same. Chaos causes me stress so I like to stay in control, lists for everything and if it’s not in my diary it’s not happening!

The spreadsheet is amazing and will stand you in good stead. One thing to warn you though is that diabetes isn’t a simple equation of input x and y happens. Being able to carb count accurately will help a lot but some days it just won’t add up. You’ll see some patterns (exercise, weather, certain foods, illness, etc) but sometimes it just will not behave. Think of all the data as weather forecasting - you have models to work from to give you a reasonable prediction but it won’t always be 100% accurate. The good thing is there will be more weather tomorrow and you get to go again. Being able to go with the flow when things don’t work as they ‘should’ is a key to keeping your sanity.

(We have a notebook with random numbers scribbled in as I am not a spreadsheet person 😉)

 

[Mrs Crusty]

The spreadsheet is amazing and will stand you in good stead. One thing to warn you though is that diabetes isn’t a simple equation of input x and y happens. Being able to carb count accurately will help a lot but some days it just won’t add up. You’ll see some patterns (exercise, weather, certain foods, illness, etc) but sometimes it just will not behave. Think of all the data as weather forecasting - you have models to work from to give you a reasonable prediction but it won’t always be 100% accurate. The good thing is there will be more weather tomorrow and you get to go again. Being able to go with the flow when things don’t work as they ‘should’ is a key to keeping your sanity.

(We have a notebook with random numbers scribbled in as I am not a spreadsheet person 😉)

That’s exactly our problem today. Massive spike up over 10 mid afternoon, no reason so assuming it’s the heat! Doing well not to worry over these anomalies though

 

[Lilmssquirrel]

Hi @Mrs Crusty

I'm a mum of a newly diagnosed 10 year old - 21st July so I feel your fear.

I'm also an avid spreadsheet jockey and get a bit frustrated when you realise there are variables that you don't know about that derail all your hard work. We are struggling with real lows at the moment. Seven hypos since Thursday; tweaked the novorapid and lantus a few times but mostly topping up with cereal bars between meals as a precaution. Too many sleepless nights but these lovely people in this here forum have kept me just on the right side of insanity.

And the real life stories really help way more than the stuff from the hospital.

I'm fearful of the return to school as I can't get hold of school to do the IHP but hopefully we'll have a libre before September which will help.

Good luck - and if you need an ear to bend, feel free to DM me x

 

[SB2015]

Welcome to the forum @Mrs Crusty

I am already impressed by how you and your son are managing and it has only been a few weeks. Well done to you both (and @Lilmssquirrel an DD who are also doing so well).

School is going to be a bit weird for everyone this coming term, but it will be good, and necessary to get the IHP in place before your son goes back. From my experience most people will gravitate back for results and then be there off and on until the start of term. Just keep trying.

The spreadsheet is a great idea for you all to reference,and it takes out some of the work at meal times totting up the carbs. Is he planning to take a packed lunch? That might be good at the start at least as he will then know the carbs.

A book I found very useful was Type1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas. It explains everything so clearly and is regularly updated with the latest tech, such as the Libre and most recent pumps.

Keep in touch, allow yourself and your son to grieve, it is normal. Then find your new normal life which can include all that you did before but with just a bit more planning and preparation.

 

[stephknits]

Welcome to the forum from another mum of type 1 recently diagnosed, but also with type 1 myself. Sounds like you are doing amazingly well! We are struggling with the heat as well with lots of hypos.

 

[trophywench]

Everyone's struggling wit the heat so don't think for a single minute that it will become easier to deal with once you've been doing it for 40-odd years and you're a great grandma, cos it doesn't. I did think this very evening though (as one sometimes does when chewing fruit pastilles to deal with a hypo) that normally when it happens because of heat I'm on holiday abroad so can indulge in some local delicacy normally verboten to me, like giant jam doughnuts, actually made with stewed fruit in their middles rather than just jam, churros liberally coated with vanilla sugar, a great dish of full fat Greek yoghurt and local honey, obviously ice cream, or a Cornish/Devonian cream tea. You know, things I usually manage to avoid but still love - so have the perfect excuse cos they're medicinal ! Bloody boring having hypos chez moi.