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Newly Diagnosed Type1 parents to 5yr old :-(

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649tom

New Member
Relationship to Diabetes
Type 1
Hi all,

Our names are Tom and Georgie and our beautiful little daughter Scarlett was rushed to hospital 2 days before Christmas.

Sadly, but thankfully, she was diagnosed with Diabetes pretty quick and we just caught it before full Ketoacidosis hit. (think that's the correct spelling).

She was put on a drip and dosed with insulin and after a couple of days in hospital we managed to get home for Christmas day.

We've found the whole experience very difficult, daunting, heartbreaking, shocking, exhausting and just generally tiring. The only one who is doing great seems to be Scarlett. She's a little dainty softy but has not cried, complained or moaned once over her new regime, diet and continual injections. We're so proud of her!

We're now starting to learn how to get her BG levels to remain in the 4-7Mmols range. Her BG charts still looks like the Himalayas still after 2wks.

Any help, advice, tips or encouragement welcome here.

xxx
 
Hi @649tom, welcome to the forum and I’m sad to hear of your little girls diagnosis.
i myself was diagnosed at 7 years old and you’ll be glad to know there is so much help out there now. You will hear from some parents in your situation in the next days who will help you out with advice and answer your questions a little better than I could.
my small bit of advice is accept the situation as soon as you can and start learning how to manage her condition. With the technology out there now it should have a minimum impact on her.
I wish you all much success and luck on your new journey together, it will seem uphill sometimes and like flying a kite others but you will get through it don’t worry.
 
It isn't a book to read straight through, though you can of course. It's a reference book, written in readable English for the non medically qualified - but will be useful to firstly you and then both you and your baby once she starts handling it herself. My hospital clinic DSN used part of it to reiterate something she was telling me several times when I was the tender age of approx 60 !
 
Sounds great. Thank you fornthe heads up. I've ordered it from Waterstones
 
Welcome to the forum @649tom and I am sorry to read of you ur daughter’s diagnosis.

There is a lot to learn very quickly with the diagnosis, but it does get easier.
The book that @trophywench is a very good reference. I still dip into mine. It is clearly referenced and indexed and the explanations are clear.

This forum is also very useful and I have learnt so much from others on here. Ask absolutely any questions that you have. Nothing is considered silly on here. Just ask.
 
Welcome to the forum @649tom

Sorry to hear about Scarlett’s diagnosis. So glad she is adapting so well, and great that you were able to get back for Christmas day.

It’s completely natural to feel a bit shocked and overwhelmed at this point, and you are on a very steep learning curve - but diabetes is usually a manageable condition, and while it does take a bit of planning and some lateral thinking sometimes it shouldn’t stop Scarlett doing anything she wants.

I‘m tagging @Bronco Billy @Thebearcametoo @Sally71 and @stephknits who are some of our regular parent posters who may have some pearls of wisdom to offer.

Personally I’d not stress too much about trying to keep within 4-7. I think 4-10 is plenty challenging enough, and it’s important to recognise that diabetes will throw plenty of curve balls in childhood and adolescence.

Aiming for a decent ‘time in range’ overall is better than stressing over any individual wonky numbers. 🙂
 
Hi, what a horrid time to get a diagnosis!

Your head will be full right now but it will soon become second nature. We’re not quite two years into it with our daughter.
Don’t get too het up about her numbers right now. The first month or two it’s all about gathering data so that your team can work out the right ratios to put her on to try and keep her somewhere near target. And there will be regular changes then as she grows and her insulin needs change.
You will soon become adept at knowing what needs to go up and down but do keep in close contact with your team as they are more than happy to help out. Especially in the first months we had some sort of contact with our team about once a week, whether planned or a quick query about something or other.

Take some time to grieve the life you expected for your kid. It’s not like this will stop her from doing what she wants but it will be another level of background worry for you. Use the team psychologist if you need to and come and have a moan on here.

Don’t chase perfect numbers. She will be able to get a good enough 3 month average (HBA1C) without being always in target (we had months of being 10-12 much more often than in target). If you get offered a pump and a Libre or other monitoring then definitely look at it but getting the hang of finger pricks and injections is good as they will always be what you fall back on if there are any issues with the tech (we only moved onto a pump and CGM 18 months after diagnosis and whilst we love them she wasn’t ready before that and she did just fine without it).
 
Hi from a type 1 and a parent of a type 1. My daughter was diagnosed in May. I think as parents we tend to struggle more than the children when first diagnosed. We can see the bigger picture and the perceived obstacles stretching out ahead, whereas they tend to just get in with it. I think it takes longer for them to reach the upset stage. How.old is your daughter?
Do ask away asrhereis loads of experience on here and we are always here if you need to vent too.
 
Just thought - even non diabetics don't stay in such a narrow range as 4 - 7 all day every day. You try testing your blood immediately before a meal and again afterwards. And your pancreas works properly.

ALL hormones at work affect BG whether they are normal childhood growth hormones or once pre-puberty, puberty or periods get established. Phew!
 
Hi from a type 1 and a parent of a type 1. My daughter was diagnosed in May. I think as parents we tend to struggle more than the children when first diagnosed. We can see the bigger picture and the perceived obstacles stretching out ahead, whereas they tend to just get in with it. I think it takes longer for them to reach the upset stage. How.old is your daughter?
Do ask away asrhereis loads of experience on here and we are always here if you need to vent too.
You couldn't be more right at the moment. She's 5 and a half and taking it in her stride. We're both home to monitor night and day at the moment. The thought of her going back to school and us going back to work scares the life out of us.
I'm already getting the feeling that the food advice from the dieticians at the hospital is outdated. Most people who have steady and cosistant blood sugars seem to be on some sort of low carb diet. We were told to give her cocopops andd pizza if that's what she wants. I'd like to know what is an ideal target for carbs for each meal. We were given the ancient pie chart showing recommended amounts for each food group. This surely needs revising as people live much healthy lives these being vegan for example.
I don't even know how to offer a ommelete for breakfast. It won't require bolus but surely the slow rate basal will still bring her levels down. It's a minefield. We're giving carbs just to feed the insulin it feels like sometimes.
 
The book Carbs and Calls is a great guide to judging the amount of insulin needed for calculating your insulin requirements. The book shows you in pictures meal servings on a plate, carbohydrate amount which you can judge the insulin required for your meal. It’s also online too and let’s you construct the meal you are having and counts the carbohydrates so you can dispense the insulin. Hope this helps, it did for us and my 9 yr old boy when he became T1.
 
Carbs and cals is a big help. Initially my daughter's diet changed quite a bit when it came to snacking. Firstly, the team wanted to see how her meal time ratios were doing, so wanted her to have carb free snacks. Then she didn't want to jab for a snack, so chose to have low or no carb snacks. Her meals didn't change though, so she has a massive bowl of coco shreddies every morning, which I think is somewhere around 120g carbs. She has worked our how early she needs to pre-bolus so that she doesn't spike and is happy with that. I tend to not have breakfast as I always spike and probably have in total around what my daughter has for carbs at breakfast! Its an individual choice. For us, it is important that Alice feels like she can have anything she wants. Sometimes she chooses to save it till later if her numbers are on the higher side, she has much better self control than me.
I have to say that Alice is between 90 -100 percent in target everyday and her Hba1c is 42. She eats around 250-400g carbs a day.
I can totally understand how scary it is thinking about school, at least you have some time to get more used to it before she does go back. We really valued that time when Alice was diagnosed in May. Your team should work out a care plan with you and train staff members at the school.
 
You couldn't be more right at the moment. She's 5 and a half and taking it in her stride. We're both home to monitor night and day at the moment. The thought of her going back to school and us going back to work scares the life out of us.
I'm already getting the feeling that the food advice from the dieticians at the hospital is outdated. Most people who have steady and cosistant blood sugars seem to be on some sort of low carb diet. We were told to give her cocopops andd pizza if that's what she wants. I'd like to know what is an ideal target for carbs for each meal. We were given the ancient pie chart showing recommended amounts for each food group. This surely needs revising as people live much healthy lives these being vegan for example.
I don't even know how to offer a ommelete for breakfast. It won't require bolus but surely the slow rate basal will still bring her levels down. It's a minefield. We're giving carbs just to feed the insulin it feels like sometimes.

I would be of low carb for someone so young, while low carb approaches can be effective for T1 adults who like the approach (we have several on the forum) they aren’t really necessary or advised for children - developmentally or psychologically. Carbs can be happily accommodated by a good understanding of insulin action and well timed boluses.

What about children with diabetes?
Low-carb diets should not be recommended to children with diabetes. Low-carb diets in children can lead to growth failure, increased risk of cardiovascular diseases, and may contribute to psychological problems [14]. Children require adequate nutrients for growth and good health so restricting foods with essential nutrients can lead to nutrient deficiencies which can have long-term effects on their health. There is no evidence that low-carb diets are beneficial in children with diabetes.


It’s also important (especially in later years) that her diabetes fits in easily enough with others around her, and that she doesn’t resent it for stopping her doing (or eating) stuff.

As for no carb meals or snacks, basal insulin is *only* supposed to be holding Scarlett’s BG levels steady. If no bolus insulin is active BGs should remain within 2-3 mmol/L up or down from where they started until the next meal dose (or overnight). In reality on injections there can sometimes be a bit of a ‘Hobson’s Choice’ for some sectors of the 24 hours, but one of the beauties of MDI is that Scarlett should be able to miss meals, or eat meals of vastly different sizes without having to feed the insulin already circulating. 🙂
 
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Most people who have steady and cosistant blood sugars seem to be on some sort of low carb diet. We were told to give her cocopops andd pizza if that's what she wants. I'd like to know what is an ideal target for carbs for each meal.

That’s not true @649tom It’s perfectly possible to eat a fair amount of carbs and have very good control. Us normal-carbers just don’t talk about it so much because we’re not over-invested in promoting a fad diet with no proven longterm benefits. Yes, that’s a pointed comment from me but I’m not being flippant. There are three pieces of advice I’d give someone with a newly diagnosed child - and one of those is to avoid certain very low carb sites and their proponents. The other two are to consider a pump, and to become your own expert.

I’m sorry to hear about your daughter’s diagnosis. There’s no good time but Christmas isn’t nice. It does get easier, but be kind to yourselves. The practicalities are ok but getting your head round the whole idea of it is hard. On a positive note, the tech we have now is fabulous and the future looks good.

Edited to add that with Type 1 your tool is insulin more than diet. I eat pizza, coco pops on occasion, cheesecake, desserts, chips - all in moderation but that’s because of general health not my diabetes. My control is excellent.
 
My daughter was almost 9 when she was diagnosed and we found that to begin with having somewhere around 50-60g carbs per meal suited her best. We tried doing lower carb but it didn’t suit her and higher carb meals tended to mean more room for error (although obviously there are some meals where there are more carbs like parties etc). She’s grown massively in the last couple of years and is going through puberty so now we tend to be around the 80g carbs per meal mark. We tend to do big meals for each meal so she snacks less but growth spurts can mean that’s unpredictable. We do sweets, desserts etc with meals and try to make sure she has protein and fat with each meal so that her glucose is less spiky but sometimes she just wants pasta or sushi or something that does spike her and we’ve worked out ways to help deal with those. She can eat whatever she wants we just control the portion size.

It can help in the early months if you keep her diet similar to what it was prediagnosis while they finesse her ratios. If you change her diet massively that can make it harder to work out what changes are from diet and what from the insulin. Some families then do move onto low or lower carb meals but kids vary as to how well they adapt to that.
 
Thank you so much for your comments everyone.

Most people who have steady and cosistant blood sugars seem to be on some sort of low carb diet. We were told to give her cocopops andd pizza if that's what she wants. I'd like to know what is an ideal target for carbs for each meal.

That’s not true @649tom It’s perfectly possible to eat a fair amount of carbs and have very good control. Us normal-carbers just don’t talk about it so much because we’re not over-invested in promoting a fad diet with no proven longterm benefits. Yes, that’s a pointed comment from me but I’m not being flippant. There are three pieces of advice I’d give someone with a newly diagnosed child - and one of those is to avoid certain very low carb sites and their proponents. The other two are to consider a pump, and to become your own expert.

I’m sorry to hear about your daughter’s diagnosis. There’s no good time but Christmas isn’t nice. It does get easier, but be kind to yourselves. The practicalities are ok but getting your head round the whole idea of it is hard. On a positive note, the tech we have now is fabulous and the future looks good.

Edited to add that with Type 1 your tool is insulin more than diet. I eat pizza, coco pops on occasion, cheesecake, desserts, chips - all in moderation but that’s because of general health not my diabetes. My control is excellent.
I wouldn't ever change her diet for a low carb or no-carb diet based on what I've read off the internet. I've just seen a lot of adults swear by them but a childs requirements are very different.

She's a rather free spirit and love to dance and roll around a lot. Shes also HATES anything attached, stuck and hanging off her so I think a pump is while off tbh. Getting her to accept the Libre sensor was hard enough and she's not had it changed yet which we're dreading Tuesday. So basically we need to become 'experts'.

We've just checked our AccuChek BG Bolus adisor Time-Blocks and discovered that the dinner time one starts at 5. This means that for the past 2wks we've eaither been dosing correctly or sllghtly over as the lunch time time block finishes at 5pm and has a completely different carb ratio dammit. I should read the instructions that the Nurse told me to sling on the bin and set it up myself, lesson learnt.
 
We've just checked our AccuChek BG Bolus adisor Time-Blocks and discovered that the dinner time one starts at 5. This means that for the past 2wks we've eaither been dosing correctly or sllghtly over as the lunch time time block finishes at 5pm and has a completely different carb ratio dammit. I should read the instructions that the Nurse told me to sling on the bin and set it up myself, lesson learnt.

Is that the Expert? It’s a while since I’ve used one, but I think you should be able to adjust the time blocks - @Kaylz may know which buttons to press?
 
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