Mum of 15yo diagnosed 15march 23

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lissyflo

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Here is our journey so far...
First started getting leg cramps in November 2022, did some research and put it down to teenage hormones, growing pains
Noticed slight weight loss and slight increase in drinking water just after Xmas,
Weight loss increased almost overnight by Jan, had bloods taken 12 Jan 2023
17 Jan get text to say book appointment to discuss results
Try for 3 days to book appointment, then get message from GP practice that says test results are back to normal on 20 Jan
Conclude that it must be hormones then but will keep monitoring if any changes
Busy Feb so just carrying on as usual
Still a bit worried about high fluid intake, and still losing weight but slower, notice some unexplainable bruising but put down to wrestling with friends
Monday 13 March 2023 Notice big bruise on left shoulder last night, so decide to contact GP online and explain symptoms again ,
Tues 14 March 2023 call taken from locum at GP who is very cross that Bob's blood results from Jan have been dismissed and that we were not contacted to go to hospital, locum doc tell me to pick up letter and sends us straight to A&E
Bob diagnosed almost instantly as type 1 diabetic, started on insulin by nurses and kept in overnight monitoring
Hospital staff shocked that we were not told in Jan as could have been fatal
Wednesday 15 March 2023: explained our journey again to new doctors, they said they have escalated a complaint about GP, Bob to stay in till sugars are level
Transfer to QE 1330, settled in and set up with the nurses, and diabetes team
Thursday 16th March, lots of learning with diabetes team, discharged 16:00
Bob went to cadets
 
Welcome to the forum 🙂

It’s very worrying how the first GP just ignored those results. How’s your child coping with the diagnosis?

Do you know what the HbA1C was?
 
Lily123 said:
Welcome to the forum 🙂

It’s very worrying how the first GP just ignored those results. How’s your child coping with the diagnosis?

Do you know what the HbA1C was?
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He's doing OK, luckily he's good at maths, so seems to be taking it in his stride so far,the real test will be back to school,
I know the HbA1C was high but not sure on the exact figures , the locum said they should have called me straight away not send me a message
I've made a complaint about my gp and the hospital have also sent their concerns , my cousin is going to help me raise a negligence claim
 
As you should, that situation could have been a lot worse but at least that locum GP was on the ball enough to notice.

Has he been offered a Libre?
 
Lily123 said:
As you should, that situation could have been a lot worse but at least that locum GP was on the ball enough to notice.

Has he been offered a Libre?
Click to expand...
Thank god for locum, or i would have been still thinking it was teenage hormones!! Too early yet but for libre but they have said definitely an option once we've got the hang of it all, so looking at about 3-6months, have a holiday to Turkey booked for August so be nice to get it before then, and the team have already said they'll come round to see us and sort out everything so not to worry about holiday yet
 
Lily123 said:
Do you know what the HbA1C was?
Click to expand...
Given Type 1 starts so fast with children and hba1c is an average over three months, is hba1c relevant in this situation?
I know when I was diagnosed, the GP sent my blood off for the hba1c but I was told by the diabetes clinic this was the wrong thing for Type 1 diagnosis. It was nearly 20 years ago so things may have changed
 
helli said:
Given Type 1 starts so fast with children and hba1c is an average over three months, is hba1c relevant in this situation?
I know when I was diagnosed, the GP sent my blood off for the hba1c but I was told by the diabetes clinic this was the wrong thing for Type 1 diagnosis. It was nearly 20 years ago so things may have changed
Click to expand...
Oops having a complete moment then.. sorry

Considering I didn’t have one, I should have known that
 
lissyflo said:
Bob went to cadets
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Well done Bob and you.

This sums up an approach that you and Bob can use to ensure that his Diabetes does not stop him from doing anything. It is a lot to take on board at the start and his Maths competency will help him with the carb counting. It all gets easier and much of it becomes automatic.

Your holiday will definitely be a good target for his getting the Libre.

Keep in touch and ask any questions that arise. Nothing is considered silly on here. Just ask.
 
SB2015 said:
Well done Bob and you.

This sums up an approach that you and Bob can use to ensure that his Diabetes does not stop him from doing anything. It is a lot to take on board at the start and his Maths competency will help him with the carb counting. It all gets easier and much of it becomes automatic.

Your holiday will definitely be a good target for his getting the Libre.

Keep in touch and ask any questions that arise. Nothing is considered silly on here. Just ask.
Click to expand...
Thank you, as a family we try to look for the positive and carry on as normal, carb counting is giving me a massive headache though, Ive never been great at meal planning anyway and I'm finding it really hard to work stuff out that isn't from a packet with the numbers already on!
 
lissyflo said:
Thank you, as a family we try to look for the positive and carry on as normal, carb counting is giving me a massive headache though, Ive never been great at meal planning anyway and I'm finding it really hard to work stuff out that isn't from a packet with the numbers already on!
Click to expand...
It is surprising how much info on carbs your head will fill up with. How about getting Bob to help build up a chart of things that you cook from scratch. Think of it as a bit of extra Maths homework. He will be an expert at ratios, and they can be used to solve quite a variety of topics in his GCSE.

We have a chart showing the weight of different pastas, pulses and veg to give us a specific amount of carbs. Now we don’t need to work it out each time. Some packaging is clearer than others. We also revert to Google with a ‘carbs in ….’ . Now we are better at eyeballing meals which then helps when out.
 
Hi and welcome. I’m so sorry that the GP surgery missed his diagnosis early on and thankful for the locum. My kid was 8 when diagnosed and he’s now 12. We found the support from the diabetes team at the start amazing. Paeds diagnosis is night and day in terms of the support you get compared to adult diagnosis.

At the start the two aims are 1) to stabilise BG/slowly bring it into target and 2) to gather data. It’s a good idea to start with finger pricks and injections as this is your fallback even if he ends up with a sensor and/or pump. By August you will be feeling a lot more confident about it all and your team will help you with anything else you need to know. School will get a chat with the diabetes team and a plan put in place and diabetes education if needed. He may find that he needs some adjustments to his routine and if he’s shy about testing and injecting in front of people then he will need a safe space to do that and may need to leave lessons a few minutes early to do that. Teens will either be blasé about their management or want to hide it. If he can involve his mates and be open about his diabetes it will be easier for him.

Carb counting - we use the carbs and cals books still but a lot less than we did. For meals sometimes I look at a ready meal on the supermarket website and base carbs off that. We had a notebook at the start where we scribbled everything down and kept a list of common things (it still gets used as a reference for things like dominos pizza). You will soon (by soon I mean in a few months) get to the point where you can look at a plate of food and make a good guesstimate though. Don’t forget nothing is permanent. You can always give more glucose or more insulin later if needed. And even if you get the carbs spot on it doesn’t always translate to the expected BG.

You will make mistakes - taking the dried carb count of something instead of the cooked or forgetting to add the ice cream or seeing the per 100g amount and not adjusting for the portion size. The key is to know what to do if it’s all gone wrong.

Don’t get too hung up on always being in target or always getting the carb count right etc. it’s a long game and you and he don’t want to get burnt out.
 
Welcome to the forum @lissyflo

Sorry to hear about the rough start you with Bob's diagnosis :(

Sounds like you are off to a cracking start though! Glad you've found the forum 🙂 It can be so handy to have the 'hive mind' to call on when you have any questions, or are looking for a selection of options, ideas and experiences about different situations or circumstances you are worried about or considering.
 
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