• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

Parent of a type one daughter.

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
J

Jill_Ker

New Member
Relationship to Diabetes
Parent of person with diabetes
Hi everyone

My little girl (8) was diagnosed as type 1 around a month ago. It's such a whirlwind change of life for our whole family (2 other daughters too).

I think we are doing ok, her strength up until now has amazed me but this past weekend she had a total flop and is now asking "why me", "I don't want to be diabetic anymore", as I am sure yous all have experienced the heartache that comes with these type of statements. Anyway, I am rambling.... It's nice to be here and I am looking forward to advice and chat 🙂
 
Hi Jill and welcome.

So sorry to hear about your daughter's diagnosis. It is common for there to be a period of acceptance and then the realization sets in that this is for life and that is difficult for all of us to rationalize let alone an 8yr old child and I can't begin to imagine how difficult/heartrending and downright scary it must be for parents.

We have quite a few parents on the forum (there is a parents section if you haven't already found it) @Thebearcametoo and @Bronco Billy are two of the experienced regulars who will no doubt be along to say "hello" and offer support and advice in due course.
In the mean time if you can tell us a bit about how your daughter's diagnosis came about and which insulins she is on and any gadgets she has to help you manage her BG levels (ie Freestyle Libre which is the sensor which goes on your arm) and how she is managing the practicalities ie is she able to inject herself yet and/or finger prick... and any initial difficulties that you are facing, then we will try to point you in the right direction. Feel free to ask any questions that crop into your mind or just have a rant about the unfairness of it because we all understand that feeling. I can assure you, things do become a lot easier with time but having advice and support from people who have been there and got the T-shirt really makes a massive difference.... at least it has for me. I would be lost without this forum.
 
Thank you so much for your reply.

Looking back, the signs were there around 4 weeks prior to hospitalisation however the reason I took her to the GP was that her little mouth was covered in thrush :( the GP (earth angel) knew it wasn't right and tested her blood sugar and she was 26 and going up, they sent us to childrens a and e and that's when they said she was in DKA, we were moved to a ward (infectious disease ward) as there were no beds on the diabetic ward, it didn't really matter anyway as she was pretty out of it! She was in DKA for a further 2 days as they just couldn't get the ketones down. Once that stabilised, we got a bed on the proper ward were the education all started. My daughter is also pre diagnosis ASD so things had to be visual for her. We were in hospital for just over a week and have been home for three weeks.

She only went back to school last week as there was a breakdown of communication with the school and paediatric nurses.

She's doing all her own injections (doesn't like anyone else to do it at all) me and my hubby do the calcs but she administers it herself, same with the glucose monitoring.

Following the emotional flop I have emailed to try and get her a pump however have been told that in Belfast the waiting list is long and it won't be anytime soon :( she is getting a libre fitted tomorrow which I am hoping makes things a little easier for her (and settles me a bit.too)
 
Funding for pumps does take time so it is good that you are looking to get on the list at least. Libre is brilliant and hopefully will make things a little easier for her and yourselves. Maybe you could look at getting some cool patches/stickers for it to make it fun and colourful just to make it more attractive to her as I think it is really helpful to learn to be open about your diabetes from an early age and not try to hide it. I think the adverts on TV for LIbre are a good step forward in people understanding and having conversations around diabetes, so being proud of your Libre sensor (particularly in these summer months) and making a feature of it is quite cool rather than something to feel embarrassed or ashamed of.... Just my thoughts anyway! The psychological impact of diabetes needs as much consideration as the practicalities of it, but the tech available these days makes managing it so much easier than it was 20-30 years ago and it is getting better all the time, so the future is very bright in that respect.
 
It is amazing that she is doing her own injections and finger pricks already. What a brave and independent young lady. You must be very proud of her!
 
We really are, she said it's like brushing her hair "it's worse if someone else does it". That's an awesome idea about the stickers etc!! She's a crafty little girl so I think she will enjoy that 🙂
 
Hi and welcome.

my daughter was 8 when she was diagnosed too and did all her own injections for the beginning. It’s been a problem sometimes as she won’t accept help from anyone else to do her injections, Libre, dexcom or pump at times when she’s found it difficult. We had a couple of months post diagnosis where she was very positive and took it in her stride and then she had a couple of months of it being really difficult but we got through it. Since then we’ve had ups and downs. She’s now on a pump and dexcom but for the first 18 months was just finger pricks and injections and last month had a break from both the pump and dexcom as it all got too much for her.

Try to stay in the moment as much as you can. Having ‘good enough’ management is fine it doesn’t have to be perfect (and with growing kids everything will change so you never really feel like you have it in sorted). Libre, pumps etc can give you better control but aren’t always the easy answer so yes get on the list for a pump but don’t worry if it takes time (ours took about 3 months from when we said we wanted one to actually getting it).
 
Thank you for the advice. I can see her demeanour change this past week or two :(

I think she's most struggling with the change in eating patterns as she would have been a bit of a grazer and are small things quite often whereas now we have to reduce to two snacks and three meals.

Three months sounds better than what I expected however with covid etc, no doubt it has prob made this a longer process.

Did yous try the I port by any chance? The nurse said to me today about it but I'm not sure about it
 
Hi @Jill_Ker, welcome to the forum.

Your experience is similar to ours when our daughter was diagnosed aged 6. Our GP was slower off the mark (almost with tragic consequences) but 12 years later, she and we have got through all the challenges that diabetes can throw at us and her brother, who was diagnosed a few months after she was.

It’s fantastic that your daughter is doing her own injections already. The more she can be in control of what happens, the more readily she will accept having diabetes. Inevitabley, there will be bad days among the good, but when they happen, remember that everyone will get through them and out the other side.

Both of mine have a Libre and it makes things a lot easier.

Don’t hesitate to ask about anything you need to know and remember, no question is too silly.
 
As I was posting, you posted about snacking. There are some no carb foods she can snack on. Cold meats (except sausages) and cheese products such as cheese strings are good examples, and not necessarily unhealthy.
 
She goes through phases of liking things (seems to be a sensory thing) ATM cheese is a no/no as is ham etc!! She has been eating sugar free jelly a lot! She was eating Beef jerky which I thought was free but after checking her blood last night she was running high so it must not be carb free. Any other suggestions massively welcome
 
Fat and protein without carbs can increase sugar levels so it’s not necessarily totally free but generally a high from a snack can be corrected at the next meal without any problems. You’ll find some foods have a different tail in terms of carbs so you may get a later spike from things like pizza (but everyone is different so you will have to work out from trial and error which foods are most likely to cause issues). Once you have the Libre you will have more data to show when she peaks and dips and that will help you understand what’s happening but try not to get too bogged down in the data and trying to get things perfect. We do big meals with dessert which cuts down on the need to snack but obviously kids aren’t consistent in their appetite so we sometimes have snacks too. We try to keep snacks around 10-15g of carbs but sometimes she needs more.

We found that we would only get a few weeks of levels being stable then she would grow and we’d feel like we were chasing our tail. It would often take me a couple of weeks for the penny to drop that her basal needed increasing or a ratio needed changing. Your team will help you work out any changes so don’t be afraid to drop an email to them with the data from the meter so they can fine tune things.

There should be a psychologist attached to the team. It’s worth asking for a chat (the psychologist is there for the whole family too btw so you can make an appointment for yourself or for your other children). Often there’s a bit of a wait but it’s much faster than relying on CAMHS.

Pump funding and roll out varies from region to region. Here (Oxfordshire) they do a pump info session 3-4 times a year and you need to have done that before you then say yes you want the pump and then you choose which one and they apply for the funding etc. What pumps are on offer varies from region to region. We knew we could self fund a dexcom and it works with the tslim to help manage levels so for us the combo of tslim and dexcom was the best choice.

I presume the application for DLA is the same there. You can’t get it until 3 months after diagnosis but it’s worth getting the forms in as soon as you can so it’s all ready to go. It’s a beast form but worth the effort. We get mid level DLA until she’s 17 without having to reapply (unless they change the rules) so at least we don’t have to keep doing the form. We use the money to fund the dexcom and have used it to do holistic support stuff when she was struggling or creative classes to help her cope.
 
Welcome to the forum @Jill_Ker

Sorry to hear about your daughter’s diagnosis :(

Hope it’s helpful to have the hive mind and broad shoulders of the forum to lean on over the coming months.

Feel free to ask any questions, or simply rant and moan among people who completely understand the frustrations of day-to-day BG juggling 🙂
 
She got her libre yesterday! It's such a great piece of kit!! She has two hypos yesterday and the libre was alarming low twice through the night we have clinic on Monday so I will say then about the late afternoon hypos
 
So you did a blood test every time the Libre alarmed for a low?

This is unfortunately necessary - Libre tends to read lower when it is low and higher when it is high - so the blood test does not prove to be quite as low or as high, hence treatment decisions in those circs should be based on blood tests not Libre ones.
 
Jill_Ker said:
She got her libre yesterday! It's such a great piece of kit!! She has two hypos yesterday and the libre was alarming low twice through the night we have clinic on Monday so I will say then about the late afternoon hypos
Click to expand...

Ah that’s great to hear that she has Libre2. Hope you find it really useful in getting to grips with things. just remember, there’s no such thing as perfect BGs. Sensor traces are just information, they aren’t a measure of effort or ability, they are just numbers to help you decide what to do next 🙂
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top