Daughter diagnosed 3 weeks ago type 1 age 11

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lizzie19750

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Hi, My daughter was diagnosed with type 1 diabetes 3 weeks ago, she’s also waiting to be assessed for ASD, she’s coping extremely well and we are so proud of her.
I’m feeling very anxious when I’m not with her and constantly worrying about what her levels are like. Does anyone know of any support groups for children who are type 1 in the South Yorkshire area? We applied for the weekend away but didn’t get short listed this time and she would love to meet other children like her! Thank you for your time. Liz
 
Welcome @lizzie19750 Sorry to hear about your daughter’s Type 1 diagnosis. It’s very natural to worry. Does she have a Libre or a CGM?

I can’t answer about the support groups but there are parents of Type 1s here, including @Sally71 and @Bronco Billy
 
I’m surprised at that @lizzie19750 I know they often delay access to insulin pumps, which I agree with, but not to have a Libre or CGM disadvantages her team as well as her and you because they can’t get a 24hr read out of her blood sugar, which would help them make adjustments. It’s also depriving her and you of the reassurance of alarms, especially at night.
 
We have the Aveo blood monitor that transfers all the info to an app that then monitors the insulin she needs and also has on board, the diabetes team can access that info and have told us to adjust her long lasting insulin a few times. I’m hoping that at her first review in a few weeks they will let her have one then.
 
Welcome to the forum @lizzie19750

Sorry to hear about your daughter’s diagnosis :(

Great to hear she is adjusting so well though.

I do hope you get access to appropriate tech promptly, and that you find it helpful (continuous data can feel a bit overwhelming for some people). One potential benefit of some of the sensor systems though could be the remote monitoring, where a parent can subscribe to realtime updates to the glucose readings of their child (Dexcom and Libre have different versions).

It’s a steep learning curve in the beginning. Many of the forum (of all ages) have found this book very helpful - Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - considered to be the 'bible' for children and young people on insulin regimes.
 
Hi @lizzie19750 It's great to hear that your daughter is doing so well. The children often cope better than we do. 🙂 Feeling anxious is absolutely normal, especially in the early days, but it does get easier. You can find your nearest group by going to https://volunteer.diabetes.org.uk/teams/ and entering your town or postcode.
 
Hi and welcome. My son was diagnosed aged 8 and is now 13. Those first few weeks are a lot of stress for the parents. It does get easier as you get more into a routine but the background worry is always there to some extent. We now have a dexcom and pump but for the first few years we did finger pricks and injections (at his request) and it was fine. You do get more confident with changing basal and ratios with practice and you will end up with a mental catalogue of carbs for food (we used a notebook and the carbs and cals book and keep a record of common foods but mostly I can remember them by heart now).

We’re here if you have any questions or just need to have a moan about the mental load.
 
Hi, also new here.
My daughter also 11 was diagnosed 4 weeks ago with type 1 diabetes. We have got the hang of the carb counting and injecting and for the first 2 weeks she was coping amazingly I couldn’t be any prouder if I tried, I was the one full of anxiety and worry (still am). The last week took a turn she doesn’t seem to be coping at all almost like she’s angry at the world. I am also looking to try get her to speak with people her age who understand what she is going through. In the hope it might help with this massive life change she’s going through.
 
Struggling mum said:
Hi, also new here.
My daughter also 11 was diagnosed 4 weeks ago with type 1 diabetes. We have got the hang of the carb counting and injecting and for the first 2 weeks she was coping amazingly I couldn’t be any prouder if I tried, I was the one full of anxiety and worry (still am). The last week took a turn she doesn’t seem to be coping at all almost like she’s angry at the world. I am also looking to try get her to speak with people her age who understand what she is going through. In the hope it might help with this massive life change she’s going through.
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There are several parents of Type 1 children here so do feel free to ask for help, if you say what insulins and if she has a Libre or similar that will help people know the situation.
As an 11year old she probably has hormone changes to contend with as well.
 
Hormone I definitely agree are playing a massive part.
Yea she does have a Libra sensor, she’s on Fiasco and Tresiba.
 
Welcome to the forum @Struggling mum

Sorry to hear about your daughter’s diagnosis :(

I think anger and rage is quite a common reaction when the realisation hits that this isn’t going to go away. @Inka has certainly shared experiences of feeling very angy post-diagnosis in the past.

Many people go through a process very like grieving after their diagnosis. With powerful emotional reactions of anger, denial, bargaining, depression and acceptance - not necessarily neatly in order, but sometimes in a jumble and all in the same day.

I am guessing she is on Fiasp, but chucking away that it was autocorrected to Fiasco (especially because it didn’t suit me when I tried it!)
 
Welcome @Struggling mum I identify with the feelings of anger a lot. Little things set me off, even trivial things like a visit to a supermarket. I felt resentful of people who could just eat what they wanted with no hassle. I think acknowledging her anger would help. Yes, it is bad luck and no, it’s not fair. I also found understanding it wasn’t my fault and not because of anything I’d done or not done helped a lot.

Things are easier now with the Libre, but one thing that wound me up was people assuming everything was to do with my blood sugar, like I wasn’t allowed to have normal emotions anymore. So, just bear that in mind and phrase any comments carefully. Also, just listening to her offload can help a lot.

Concentrating on normal things - her hobbies, days out, etc - helps too because it can remind her that she’s still the same person. Focus on the person she is, praise her, make it clear the diabetes isn’t part of her and hadn’t changed who she is. Make every effort to ensure she feels included and not set apart as ‘different’.

It will get easier for her. I found the first 6 months hard, but things gradually eased.
 
My thought says 'Well who the hell else is she supposed to blame?' I mean it's all very well telling us 'You aren't to blame!' but when you're little and not yet able to apply 'worldly wise' logic to this bad hand at the card game of life you've been dealt because you don't yet appreciate that the only certainties in the game truly are death and taxes - and even though Oh yes by the time I was diagnosed I was quite aware of the latter - I'm also perfectly aware cos I was reminded of the first only yesterday - that I still can't really accept the former. Except just like diabetes - I just have to, don't I.

(NB 'Just' a friend.)
 
Struggling mum said:
Hi, also new here.
My daughter also 11 was diagnosed 4 weeks ago with type 1 diabetes. We have got the hang of the carb counting and injecting and for the first 2 weeks she was coping amazingly I couldn’t be any prouder if I tried, I was the one full of anxiety and worry (still am). The last week took a turn she doesn’t seem to be coping at all almost like she’s angry at the world. I am also looking to try get her to speak with people her age who understand what she is going through. In the hope it might help with this massive life change she’s going through.
Click to expand...
Hi sorry I’ve only just logged back in, I’m sorry to hear about your daughter. Where are you located? My daughter is in South Yorkshire?
 
everydayupsanddowns said:
Welcome to the forum @lizzie19750

Sorry to hear about your daughter’s diagnosis :(

Great to hear she is adjusting so well though.

I do hope you get access to appropriate tech promptly, and that you find it helpful (continuous data can feel a bit overwhelming for some people). One potential benefit of some of the sensor systems though could be the remote monitoring, where a parent can subscribe to realtime updates to the glucose readings of their child (Dexcom and Libre have different versions).

It’s a steep learning curve in the beginning. Many of the forum (of all ages) have found this book very helpful - Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - considered to be the 'bible' for children and young people on insulin regimes.
Click to expand...
Thank you I found that book online and I’ve purchased it. It’s been very useful so far.
 
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