newbie

[danmark]

hi my name is danielle, my daughter Ruby was diagnosed as type 1 last september and its been a rollercoaster of emotions ever since

 

[rebrascora]

Hi Danielle and welcome.

Really sorry to hear about Ruby's diagnosis. How old is she and how is she coping? Diabetes must be really tough on parents so you have my sympathies. It is not easy to deal with yourself when you can feel and understand what is going on, but must be so much more difficult for parents to be trying to assess and anticipate how their child is feeling and what they need.... and the worry!!
Which insulin(s) is Ruby using? I am guessing/hoping that she will have a CGM like Libre 2 or perhaps Dexcom to monitor her levels.

Diabetes is a rollercoaster, so please understand that how you are feeling is very normal. It is really overwhelming for everyone at first but some days you feel like you are making progress and then the next day it all goes horribly wrong even when you are trying your best.... You have to learn to roll with it a bit because diabetes doesn't always play by the rules, particularly in the early days, weeks and months. It does get easier with time and experience though. Uunfortunately there is no shortcuts to that, so hang in there, do the best you can and don't beat yourself up when things go haywire because that is just the nature of the beast.

If there is anything you are having particular difficulty with, feel free to ask and we will try to help you. We have a few active members who are parents who will perhaps have particular snippets of advice to help you through this difficult period so I will tag a couple of them and hopefully they will reply when they are next online, but the more info you can give about your daughter's situation and diabetes management regime, the better people can relate to it...

@Thebearcametoo @Bronco Billy

Sending (((HUGS))) because we know it is a really tough time!

 

[danmark]

thank you, Ruby has a libre meter to input her carb info for meals, which i am working the carbs out and the meter lets us know how many units she needs..shes currently using this without a sensor as shes very against wearing one.. Ruby absolutely hates her diabetes and likes to keep it to herself which is heartbreaking, shes on novorapid for daily injections and levermir 18 units at night. Shes currently finger pricking every couple of hours which has been fine, her blood sugar levels were doing well up until around september this is when i think her own insulin completely ran out and since then blood sugar levels have been very up and down, more high than low, the nurses have been adjusting her doses at the 3 monthly hp visits but her last one was in sept. I feel like im struggling now because although shes had it for a year and her bs has been ok up until sept now its all over the place and i feel like i dont know what im doing its horrible. I am having alot of issues with Ruby eating things without taking insulin and not doing correction doses every time they are needed. I just feel helpless and a bit lost at the moment

 

[everydayupsanddowns]

So sorry to hear about your daughter’s diagnosis @danmark

It’s such a big ask for a youngster, and her reaction is completely understandable and not at all uncommon. There can be a period very similar to grieving which all of you may go through to varying degrees, with the classic emotions of denial, anger, bargaining, depression, and hopefully eventually working towards a form of acceptance where diabetes fits into her life, not the other way around.

I was diagnosed in my early twenties so don’t have any teenage / childhood experience to look back on, but we have members who went through it, along with parents and carers of youngsters with T1 - @Sally71 is another parent.

If you’ve not already had it recommended Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas is a hugely helpful book, which may fill in a lot of the blanks you are currently struggling with.

Also Diabetes etiquette for parents - “what your teen would want you to know” might give you some ideas for trying to have more positive conversations around her diabetes.

It’s really tough for you both at the moment, but hang in there - it will get easier.

 

[Thebearcametoo]

Hi and welcome

My kid was 8 when diagnosed and is now 12 and we’ve been through lots of ups and downs in that time.

Two things to suggest, is there a reason for finger pricking every 2 hours? At meals and before bed is enough unless she feels hypo. This will reduce the strain of management and might make her more willing to do insulin when she snacks (just input the carbs but don’t adjust for BG). And secondly don’t wait until clinic to make adjustments. You can upload data to your nurse at any point and get input on what changes need to be made. For the most part we will change doses at least once at home in between clinics although that’s slowing down a bit. When he was younger it would be pretty much every month because of growth spurts. It’s also worth noting that even with long periods of being higher than target you can still get a decent HbA1C so try not to sweat the numbers too much unless she’s very high (above 12-14 or so) overnight. High corrections during the day can be dealt with at the next meal unless she’s feeling ill.

Just FYI but we do big meals including puddings/sweets as it helps to cut down on the need to snack although there will always times where kids/teens need extra in between meals.

 

[Bronco Billy]

Hi Danielle. Welcome to the forum. Sorry to hear about your daughter’s diagnosis. Now is the most difficult time because you are on the steepest learning curve you will ever be on. Everyone is still getting used to the new ‘normal’. It might not seem possible at the moment, but it does get easier as you learn more, become more experienced and what is difficult now becomes routine.

Her reaction isn’t uncommon. My daughter was diagnosed aged 6 and only started to voluntarily tell people about it when she went to university. It isn’t necessarily a bad thing, as long as she does what she needs to do. Everyone handles it in their own way, which is absolutely fine.
There are so many things that can affect blood sugar levels, including emotions, so this could be a factor in the recent levels. That said, it can take a while and several adjustments for the correct doses to be found, so don’t let this get to you. Does your team have a psychologist attached to it she can speak to? My daughter had a few sessions with ours, which really helped. Something else which helped her accept diabetes was swimming because it showed her that diabetes was just a part of who she is and otherwise she is just like everyone else. Does your daughter have a hobby or an interest she could ‘lose herself’ in?

How you feel is very understandable and also not uncommon. However, it sounds like you are doing great, so make sure you remember the positives about how you care for her as well as the things you feel helpless about. It’s so easy to only think about the things we believe we’ve struggled with and forget about the good things we do, but it’s so important we remember those, too

 

[danmark]

Hi and welcome

My kid was 8 when diagnosed and is now 12 and we’ve been through lots of ups and downs in that time.

Two things to suggest, is there a reason for finger pricking every 2 hours? At meals and before bed is enough unless she feels hypo. This will reduce the strain of management and might make her more willing to do insulin when she snacks (just input the carbs but don’t adjust for BG). And secondly don’t wait until clinic to make adjustments. You can upload data to your nurse at any point and get input on what changes need to be made. For the most part we will change doses at least once at home in between clinics although that’s slowing down a bit. When he was younger it would be pretty much every month because of growth spurts. It’s also worth noting that even with long periods of being higher than target you can still get a decent HbA1C so try not to sweat the numbers too much unless she’s very high (above 12-14 or so) overnight. High corrections during the day can be dealt with at the next meal unless she’s feeling ill.

Just FYI but we do big meals including puddings/sweets as it helps to cut down on the need to snack although there will always times where kids/teens need extra in between meals.

Ruby is now 13 she was just turning 12 when diagnosed. I was told she needed to finger prick often so we have always done it every couple of hours in case she needs a correction, She also isnt aware of hypos and doesnt know when she is having one, Im really unsure of making adjustments to doseages myself.. we upload the meter data to the nurses so i just need to get in touch with them. Rubys BG has been high over the past couple of months, illnesses and an ear infection which needed antibiotics has played a part in that though. Its good to hear you still do big meals sweets/puddings because we do tend to do big meals/puddings.. i try and get Ruby to snack on low carb/carb free snacks in between meals but will let her have something carby if she wanted it. I find that because Ruby experienced a life of eating what she wanted when she wanted before diagnosis its incredibly hard to control that now when she just wants to eat the same as she was before which is causing her need for secret binges on chocolate, crisps ☹️

 

[Thebearcametoo]

Has her team talked about the effect of puberty on her insulin needs? The teen years mean she’ll need a lot more insulin than she did before and you may find that once she’s high she need significantly more insulin to bring her down because of hormonal insulin resistance. Periods also factor into it where you may find she goes low just before her period and high during it or vice versa (everyone is different) and dealing with the emotional side of periods can make diabetes management difficult too and mean she’s less willing to engage with it.

It’s fine to rely on the nurse to do adjustments but don’t be afraid to contact them between clinics.

Is her resistance to having a sensor about keeping it hidden? If so you can talk to your team about placement and maybe having a sensor on her abdomen instead of her arm. It would reduce the amount of finger pricks she had to do and depending on the sensor might mean she gets less interference from you. We use a G6 (currently paid for from the DLA money) so we can see the data on our phones without having to ask. It also means we get alarms for hypos and can see a lot more data.

A lot of management with teens is about getting the balance between them doing enough to keep their diabetes in check but not overwhelming them with demands so they then refuse to engage. So,e times we’ve got that right. A lot of the time we’ve got it wrong. Currently we’re trying to be much less naggy about stuff as long as meals are bolused well and we know what’s happening before bed. Obviously it will depend how often Ruby has hypos but it may give you some grace to do fewer finger pricks so that she might inject when she snacks. We wouldn’t correct a high except at meals or before bed (unless it’s a pump fail) so would only check in between meals for a possible hypo. It’s always a hard balance to find though.

Teenagers eat a lot. We know the stereotype of teen boys doing this but if girls aren’t socialised into starving themselves for diet culture it’s true for girls too. We used to do around 70g of carbs per meal now it’s more usually 100-110 and 40-50g of that can be dessert which is often snacks, sweets, chocolate, ice cream etc. And teen growth spurts are no joke. It can hard to keep enough food in the house

 

[danmark]

Has her team talked about the effect of puberty on her insulin needs? The teen years mean she’ll need a lot more insulin than she did before and you may find that once she’s high she need significantly more insulin to bring her down because of hormonal insulin resistance. Periods also factor into it where you may find she goes low just before her period and high during it or vice versa (everyone is different) and dealing with the emotional side of periods can make diabetes management difficult too and mean she’s less willing to engage with it.

It’s fine to rely on the nurse to do adjustments but don’t be afraid to contact them between clinics.

Is her resistance to having a sensor about keeping it hidden? If so you can talk to your team about placement and maybe having a sensor on her abdomen instead of her arm. It would reduce the amount of finger pricks she had to do and depending on the sensor might mean she gets less interference from you. We use a G6 (currently paid for from the DLA money) so we can see the data on our phones without having to ask. It also means we get alarms for hypos and can see a lot more data.

A lot of management with teens is about getting the balance between them doing enough to keep their diabetes in check but not overwhelming them with demands so they then refuse to engage. So,e times we’ve got that right. A lot of the time we’ve got it wrong. Currently we’re trying to be much less naggy about stuff as long as meals are bolused well and we know what’s happening before bed. Obviously it will depend how often Ruby has hypos but it may give you some grace to do fewer finger pricks so that she might inject when she snacks. We wouldn’t correct a high except at meals or before bed (unless it’s a pump fail) so would only check in between meals for a possible hypo. It’s always a hard balance to find though.

Teenagers eat a lot. We know the stereotype of teen boys doing this but if girls aren’t socialised into starving themselves for diet culture it’s true for girls too. We used to do around 70g of carbs per meal now it’s more usually 100-110 and 40-50g of that can be dessert which is often snacks, sweets, chocolate, ice cream etc. And teen growth spurts are no joke. It can hard to keep enough food in the house

yes her team have explained that and thats definately what im seeing at the moment, I feel like the insulin just isnt covering the meals anymore like it was before and overall feel like its not bringing BG levels down as well as it was. Rubys breakfast varies massively and is usually around 50-60 carbs but some days its a lot lower lunches are around 70-80 and dinners/puds 120-130
snacks in between are usually carb free, low carb.
The issue with the sensor was because she didnt want anyone to see it and didnt want it on her arm, she did wear a sensor for 2 days which the nurses suggested she trialed and she hated it, hated it being attached to her..she was so upset about it so that doesnt help and now i think its a bit of rebellion because she knows we all think it would be a good idea to have it its almost like she doesnt want it to spite us? she hates talking about anything diabetes related so its just really really hard.

 

[Thebearcametoo]

We had options for both pump and sensor from early in but my kid didn’t want them. Once we got them he used them for about 6 months then stopped for a while and now mostly use pump and sensor but often have a break from one or the other so none of the tech is vital but it’s good that she knows there’s an option. Does she know any other diabetics or see anyone wearing a sensor? It’s an age where they’re very body conscious and very aware of being different so having some people around her who are going through similar things helps. There’s no rush though.

Don’t forget there’s a team psychologist available to you as well as to her. It’s fine for you to have session with them without your child there.