Coping with Type 1 diabetes

[ClaireBX]

Good morning

Myself and my partner are new to the world of diabetes. Recently our daughter has been diagnosed with Type 1 diabetes.

Unbeknown to us the signs were all and she had DKA she was thirsty had a lot of wet nappies and was very sleepy. (With her being so young, you assume teething, or at the time she did have chicken pox too)! Therefore she spent her 1st Birthday in intensive care.

We are 2 weeks ahead of this now and have now been introduced to carb counting. Its hard for the both of us, as how do you know how much a 1 year old will eat, or even if they are going to like what you've prepared for dinner?

She currently has the dexcom fitted which has helped immensely! And her bloods are either Hyper or Hypo there's no steady in-between at the moment. I'll be honest, I worry all the time! I don't know what I'm doing wrong or right. But I'm hopeful that this support group will help us along our journey so HI

 

[Inka]

Welcome @ClaireBX and sorry you’ve had to join us. It’s no wonder you found it hard to spot the signs of Type 1 in such a young child. I would be very hard for all the reasons you’ve described. What insulins is she on? Have you been offered an insulin pump?

If you haven’t already got it, you might like this book Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas. It’s very popular here, and it’s good to have something to refer to in moments of uncertainty, or just as a learning aid. Also, feel free to ask whatever you want here. Nothing is silly.

I’ll tag a few parents of Type 1s for you @Sally71 @Bronco Billy

 

[ClaireBX]

Hello @Inka

Thank you for getting back to me! She is on Levemire 3.5AM and 1.5PM and Novorapid before meals. We haven't got an insulin pump as of yet, but we were told we would get one when we were discharged and that they would try their best to fast track this, so at the moment it's just a waiting game as to when. That said, she is very good at taking the injections now, she has adjusted well and I'm grateful as this takes a big weight off, initally she would cry and it was heartbreaking but slowly things are getting better.

Thank you I will invest in that book, very open to trying anything that will help.

 

[Windy]

Hi Claire, Sorry to hear about your daughter's diagnosis, I appreciate it's a lot to take in. I hope you're all bearing up.
Have you found the Parent's forum? Lots of good information in there.
Best wishes, Sarah

 

[ClaireBX]

Hi @Windy

Thank you for this.

I have been having a read this morning it does have a lot of helpful information.

Thanks again, Claire

 

[Inka]

Hello @Inka

Thank you for getting back to me! She is on Levemire 3.5AM and 1.5PM and Novorapid before meals. We haven't got an insulin pump as of yet, but we were told we would get one when we were discharged and that they would try their best to fast track this, so at the moment it's just a waiting game as to when. That said, she is very good at taking the injections now, she has adjusted well and I'm grateful as this takes a big weight off, initally she would cry and it was heartbreaking but slowly things are getting better.

Thank you I will invest in that book, very open to trying anything that will help.

With such a young child, I would think a pump would be extremely useful. It’s not really about the lack of injections, the beauty is the ability to input tiny doses of insulin. A pump is much closer to our own pancreas. A pancreas trickles out tiny doses of insulin continuously (as basal), two injections of Levemir, while good, can’t match the body’s needs so precisely at all. Also for boluses (for meals or corrections), you don’t have to choose between, say 1 unit or 1.5 units, you can dial up 1.35 units or whatever.

 

[ClaireBX]

I agree, fingers crossed the pump comes through quickly! Thanks again.

 

[everydayupsanddowns]

Welcome to the forum @ClaireBX

So sorry to hear about your little one‘s diagnosis - but she sounds like she is adapting amazingly well, and that you are getting good pro-active support from her clinic.

Great that you have access to Dexcom, and that a pump is on the cards. As @Inka says the flexibility and accuracy of the doses is a huge help, but you may also be able to get one which links with her Dex, and can make small adjustments through the day and night to try to smooth out a few of those wobbles.

Another benefit of that ‘always on‘ connection to insulin might be that you could split meal doses before and after food, giving a conservative estimate up front, and then balancing things up once you have been able to see how much she actually ate.

You could do this with injections too of course, but with a pump, there would be no extra jab, just a couple of presses of buttons. 🙂

Be kind to yourselves, there’s a lot to get used to, and it can all feel a bit overwhelming, but you are doing brilliantly. Well done!

 

[ClaireBX]

@everydayupsanddowns thank you for the kind words and advice.

we did debate splitting the doses and giving the rest after but like you said would require another injections and we would rather keep them to a minimal if we can for now, just while things are still settling as this very new for us all. A few have mentioned the pump, so I'm very keen to get this going once we receive it.

 

[Zoombie]

I’m sorry to hear about your daughters diagnosis. JDRF have a Rufus bear you can purchase to help support children with Type 1 when she’s a bit older x

 

[ClaireBX]

Thank you, I believe we already got given a Rufus bear whilst in hospital (but I'm sure she'll appreciate 2) 🙂

 

[everydayupsanddowns]

@everydayupsanddowns thank you for the kind words and advice.

we did debate splitting the doses and giving the rest after but like you said would require another injections and we would rather keep them to a minimal if we can for now, just while things are still settling as this very new for us all. A few have mentioned the pump, so I'm very keen to get this going once we receive it.

If it’s a real headache, I guess you could dose afterwards?

Not ideal as you will probably see bigger meal rises, but it could help take the pressure off mealtimes, you really don’t want food to become a source of stress and a battleground

Plus it might avoid her learning that if the dose it already ‘in’, and she refuses to eat the savoury carbs eventually you might cave and offer something sweet to get the carb count up

 

[ClaireBX]

This is very true, as when she doesn't eat it, we do worry and try anything to build the carbs back (it's a learning curve I guess) I'm hoping this time next year I'll be an expert 😉 thanks again for the advice.

 

[rebrascora]

I wonder if an "iport" might be a short term solution until you get a pump. It is basically a cannula from what I understand which is inserted every 2-3 days and then you inject into it, instead of multiple injections every day through the skin. That would allow you to split doses without sticking a needle in her upteen times. There is also something called a "TickleFlex" which is a modified injector pen that is designed to make injecting easier and less painful for children and older people who have less dexterity. It kind of gently grips the skin around the injection site and stimulates it so that the needle insertion is less detectable.
Anyway, "hello and welcome" from me too and please know that we were all pretty lost and overwhelmed to start with but we all muddles through it. I know it must be 100x more difficult when it is a small child and they can't understand or tell you how they are feeling and that overpowering sense of responsibility must be terrifying, but it sounds like you are doing amazingly well already and it will gradually start to become a new way of life and you will start to do some things almost automatically, to the point that you will occasionally not be able to remember if you injected a dose or not and you will know the carb count of various sweets and biscuits and fruit off the top of your head and roughly assess the carbs on a plate from a glance. Some people use the analogy of learning to drive. The first few times you get behind the wheel you have to think about every single little thing like dipping the clutch and finding the right gear and remembering which stalk is the indicator and look in the mirror and steer and check your speed and heaven help you if it starts to rain and you need the windscreen wipers, but after a few months you will be doing a lot of that stuff on autopilot and you just have to look out for road signs and other idiot road users etc. There will be a few near misses along the way and you will learn valuable lessons from them but most of the time you will be gaining experience and getting better and this new skill and gaining confidence..... it just takes time, so do be kind and patient with yourselves. You can't be good at this straight away, you can only do your best and learn from the mistakes.... and believe me.... we all make them!

 

[ClaireBX]

@rebrascora Hello, thank you for the above, I hope you are keeping well too!

We were told about the iport, I will ask about these again at our next appointment as you've said prevents multiple injections so it's definitely worth it in my eyes. I haven't heard of the tickleFlex before so this is new to me, but I'll read into this one thank you 🙂

It's a good way to look at it as you've described, honestly already, I do feel somewhat better for sharing with others some of the challenges that we all face and being able to speak freely and be understood if that makes sense. It's a relief to know there is support out there and we aren't alone.

Thanks again for your message.

Claire

 

[rebrascora]

Makes total sense because many of us have been in that same situation, new to diabetes and new to the forum and so many questions and uncertainties and insecurities about if we are doing things right and what happens when we get it wrong. We all understand that feeling of being overwhelmed and sometimes afraid to go to sleep and waking up in the night in a panic. Having to think and double check every little detail. Just knowing that others have got through it is reassuring and that every day and week and month you will get better at coping and noticing different things and working out different strategies to stabilize and smooth out the ups and downs.
Think about how difficult it must have been for parents 50-60 years ago who didn't even have BG meters let alone Libre or Dexcom and didn't have pen injectors but reusable glass syringes and needles that had to be sharpened and yet those children still made it. Humans are surprisingly resilient, even small children. You have some great technology to help you and protect your daughter and hopefully more on the way in the form of a pump, so you will be fine, even if there are a lot of ups and downs at first. Slowly but surely you will gain confidence and you will all adapt to this new normal.

The forum is great for celebrating each little success, letting off steam at the frustrations and picking up tips or picking brains and we are here day in day out, so come and ask whatever you need to, when you need to or just have a rant about the unfairness of it all. We understand the need for it all.

 

[SB2015]

So glad that you have found the forum @ClaireBX , but sorry to hear of your daughter’s diagnosis.

The Ragnar Hanas book which @Inka mentioned is excellent. It is regularly updated with the latest developments so worth looking for the latest edition as things are changing so much.

There is a lot to take in at the start and I think we can all relate to the feelings of uncertainty. It sounds like you have a good team to support you, and there is plenty of experience to tap into on here, so keep the questions coming.