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Hello! T1 Parent Intro

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Warren1981

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Hi all!

My 10 year old daughter is currently in hospital having been diagnosed with T1 weds night.

It was weird thankfully she was perfectly fine in herself, my wife noticed she was drinking and going for a wee much more than usual (my wife is T2) so decided to test sugars and ketones. Glucose was very high, ketone was 1.5. Did the finger prick test and it was 30.1!

Took up to AnE (picked me up from station on route as i was coming home from work) and we got see quick, triage monitor just said high got taken straight to the doctor did bloods, ketones come back ok but basically got told this will be T1 and I think we were only in hospital about 20 mins.

Since then its been nurses coming round, packs given to us, dieticians. We are not in the hospital with our local area so when she gets sent home early next week they will meet up with us.

Shes been brilliant, learnt to do the test and injections by herself but still at night she gets teary and tired and doesn't want diabetes. My wifes been great and really has jumped on to carb counting and working out the corrections. Ive done it to but its hard to understand why its not working out.

For example we work out the food (currently 1:15 ratio) add for correction but her BG hovers around 10.0 to 11.0 most of the time occasionally going down to 8 and 9 but sometimes jumping outlier to 14! The nurses said at this stage they are not concerned the local team will address eveything, but its just getting used to a new norm.

We are in South-East London and it would be nice to have some local groups. The school have been great they said they had a T1 student who left last year, but thats what worries me also I dont want my daughter to feel alone Id like her to connect to other children locally if pos and I think it would be good for us to connect with other parents.

I was actually recommended this site to go on to and was told try to get info from here rather than Dr Google and social media, although social media can also be good.

Its a bit like a rabbit in headlight at the moment 100 mph fears of just the sheer volume of complications, us not getting it right, they say she can have the carbs and at her age needs them but then her we see her sugars are not in normal range, the stories of kidney failure no matter how well its managed, when she gets ill espcially a stomach bug, things like that and reading lots of Dr Google! Which is why I wanted to sign up here and try to take in balanced information as much as I can.

The one thing we did do right though was take her to the hospital when we did! Those horror stories of DKA are awful!

Apologies for rambling! And hi!!
 
That's an awful lot for you all to take in, particularly your daughter. Kids are very resilient but it's still a shock for her and being teary and 'not wanting' it is very normal.

As for the insulin doses. It may be over time it's worked out she needs a little more but the team will address that I'm sure. It's also important not to bring levels down too quickly as that can have unwanted side effects also.

And you've done more than one thing right - you're both jumping on supporting her and getting as much information as you can as quickly as you can.

There'll be peaks and troughs now over the course of the journey but it sounds like you're doing a brilliant job and with that kind of support your daughter will be able to manage her diabetes effectively.
 
Hi and welcome.

Don’t worry about being in target at this stage, whilst 4-7 is the target it will take a while to get there and it’s safer to do it slowly so as to reduce the number of hypos than to go in strong. Also your daughter has been used to being higher for a while now and she may feel rough if you bring her glucose levels down too quickly. Her numbers are good at the moment and don’t be scared of her going up above 14 as long as it’s not all the time.

The first few weeks are a whirlwind of info and visits but it’s great to have the support from the team. You will get used to the carb counting and the ups and downs. Type 1 can feel like being in the middle of a storm sometimes but the day to day gets to be habit.

Don’t get too bogged down in the possible long term health issues. She’s on insulin now and support and monitoring is great these days as are things like pumps and sensors that can lead to great results (they’re not magic and it’s still a slog to deal with diabetes every day but they can make life a lot easier).


The book Type One Diabetes in Children, Adolescents, and Young Teens by Ragnar Hanas is a useful textbook to have. I also found Think Like a Pancreas by Gary Scheiner useful.


We’re here for any questions or for if you want to vent.

Don’t be afraid to use the out of hours numbers you’ll be given and if necessary you can call the paeds ward in the middle of the night. You’ll have lots of support once she’s home but it can feel overwhelming to begin with.

The team’s psychologist is available for parents and any other children you have not just your daughter.
 
Thank you both ever so much for your responses and advice! Its really helpful. We do know people with T1, one guy is in his 50s managed it well for 40 years no complications and one she admitted she hasnt managed it well because of lifestyle choice etc diagnosed again around this age and in her 40s but both said its not really a one cap fits all, peoples bodies do different things, although there is a frame to act within its all about seeing how my daughter reacts and changing things to adapt but it can be managed and will just become the new norm it just takes time. They also said although tech advancement is not a cure its really a massive assistance. Its also a huge help hopefully that we have local team and phone numbers it doesnt feel so alone.
 
Welcome to the forum @Warren1981

Sorry to hear about your daughter’s diagnosis, but very pleased you went to the hospital when you did and spared her the experience of DKA.

A diagnosis with T1 can be a real whirlwind for everyone in the family, the steepest of learning curves, and a real emotional rollercoaster (very like grieving, with all the intensity of emotion that can involve.

Be kind to yourselves, and take things steadily. Diabetes is generally a fairly slow-moving foe, and while there are some nasties like hypos that need urgent attention, the majority of the Dr Google horror stories take years to gradually develop.

A few years ago we had a thread where folks suggested little hints and tips they have discovered over the years that they wished they’d been told at the start of their diabetes journey. You might find some of them helpful?

everydayupsanddowns

Thread '5 Top Tips for Better Diabetesing'

Just found myself absently wondering what I would say to myself if I could go back in time ‘Bill and Ted’ style and offer newly-diagnosed-me some hints and tips for better diabetes management, and a better relationship with my diabetes from future-me.

What 5 hints and tips I might offer myself.

I suspect they might change depending on which day you asked me... but here are mine for today

  1. You can do this. It will be incredibly annoying some times, often inconvenient and frequently infuriatingly fickle... but you absolutely can do this. Keep going, even when it seems...
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Very pleased that you have found us @Warren1981 , but sorry you have needed to.
Good that you were both on the ball and took your daughter to A&E and so avoided DKA.

Good to read that your daughter has taken to doing her injections already, and it is understandable that she is upset at night. It is a lot for you all to take on board and a steep learning curve at the start. They will want to bring her levels down gradually so don’t worry if she is above the target levels for now.

Nobody gets levels that stay in target 100% of the time. It is impossible. We all drift above and below especially after meals. If we are in target 70% of the time then that is excellent, which means it is fine to be out of target for 30%. I pushed myself at the start to try to get perfect results as I was concerned about the long term complications. It is impossible to to achieve perfection but the tech that we now have available really helps us.

Your team when you are home will work with you to choose the tech that will work for your daughter. There are plenty on here using each of the pumps and we happily answer questions.

I am another fan of the Ragnar Hanas book Type1 diabetes in Children, adolescents and young adults. A great reference book with very clear explanations.

Make use of the team and this forum. No questions are silly. Just ask.
 
Welcome @Warren1981 🙂 Your daughter’s results sound good - don’t panic. Apart from the need to bring the blood sugar down slowly, the best target to look at is the Libre Time in Range IMO. She might not have a Libre yet (a blood glucose sensor worn in the upper arm) but the aim is to be between 3.9 and 10 as much as possible. Achieving that 70% of the time is classed as excellent control 🙂

I’m not sure why a target of 4-7 was mentioned above, and I don’t want that to freak you out because that’s only the target for before meals and, in addition, your daughter’s doses are still being sorted out carefully and gradually, as they should be. The Libre target is much better to look at and aim for. When I was diagnosed 30+ years ago, I was told to stay below 10 as much as possible but that brief excursions to 12+ were ok. I’ve followed that as much as possible and it’s worked well.
 
I've had T1 for 53 years this August and I've thought, many times more than once, that people with diabetes have to be like Wurzel Gummidge, the famous scarecrow. That's because Wurzel had different heads - so if I've been panicking cos I've been high or hypo for too long I have to wait until I've calmed down, then say to myself, "Right, now put your Sensible Head back on, and try and work out what went wrong so you can try and avoid doing it again!"

Very often after saying that, I find myself quoting Rene from 'Allo 'Allo and telling me, 'You stupid woman!' as it's usually something daft I have or haven't done.

Of course it's hard! But your daughter's brain is still well into 'learning mode' though yours isn't. So - she'll get there faster than your will, just now. It just takes time! And your daughter's medical team are there for you and your wife as much as they are for her - so don't EVER be afraid to ask questions. You are NOT 'bothering' them - they wouldn't have jobs if people didn't have children that developed medical conditions, would they!
 
Inka said:
Welcome @Warren1981 🙂 Your daughter’s results sound good - don’t panic. Apart from the need to bring the blood sugar down slowly, the best target to look at is the Libre Time in Range IMO. She might not have a Libre yet (a blood glucose sensor worn in the upper arm) but the aim is to be between 3.9 and 10 as much as possible. Achieving that 70% of the time is classed as excellent control 🙂

I’m not sure why a target of 4-7 was mentioned above, and I don’t want that to freak you out because that’s only the target for before meals and, in addition, your daughter’s doses are still being sorted out carefully and gradually, as they should be. The Libre target is much better to look at and aim for. When I was diagnosed 30+ years ago, I was told to stay below 10 as much as possible but that brief excursions to 12+ were ok. I’ve followed that as much as possible and it’s worked well.
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4-7 is our paeds team’s ‘ideal’ target range (as you say for before meals). Our sensor ideal range is 4-9 but it’s not uncommon for him to be above that, sometimes for weeks at a time but to still get good HBA1C readings. A target is only a target.
 
Thebearcametoo said:
4-7 is our paeds team’s ‘ideal’ target range (as you say for before meals). Our sensor ideal range is 4-9 but it’s not uncommon for him to be above that, sometimes for weeks at a time but to still get good HBA1C readings. A target is only a target.
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Indeed, it is. I just think that in the early days, it can be very easy to take things absolutely literally and very, very strictly and then panic when things ‘go wrong’. I also think that early on it can put you off food as you see what you think is a ‘bad’ rise and feel scared and miserable. Knowing it’s ok to get a 9 or a brief spell at 12 or 13 or whatever can hugely ease the already large burden. I also think it encourages compliance because it’s more do-able.
 
Thank you all so much!!!

Yes we have been a bit panicked when we got a 15.1 reading and then 12 and then 14 and then it went below 10 but they have changed carb ratio today from 1:15 to 1:13 for breakfast and lunch times and still 1:15 for dinner which has already had an effect today…but diabetic team at hospital have said to no panic at numbers and as long as things are not going higher and are coming back down or lower and getting lower ratios will be changed and its all trial and adapt and monitor. We are slightly less panicked by numbers now. We have been discharged today and Thursday our local team is coming over. They have already phoned us and sent over some helpful guidance on email. They have said she cant go back to school until the school has a care plan in place which they will do with the school. I think the enormity of this is kind of hitting me now but just taking each day at a time. Thank you all so much!
 
Welcome to the Forum @Warren1981 . There is so much to take on board when diagnosed but your daughter is such a brave girl managing her injections and test results - so daunting at first 😱 . It's great that you've got a local support team and of course you've also got us. 🙂
 
Great that you have an appointment with your local team on Thursday. As they work with you things will get clearer, and they are there to help you, especially with the return to school. It is manageable, even if it seems a bit overwhelming at times. Let us know how it goes on Thursday.
 
How are you getting on now she’s home?
 
Hi, apologies for the delay in not updating!
So she has now had the CGM fitted which has helped. We have been a bit more relaxed since the nurses come on Thursday. Her numbers are still in the teens for the most part, but as Ive read here and been told - we shouldn't concern ourselves where the numbers are at this point as long as not soaring without coming down or lowering without coming back up, they said they are actually fairly steady and this was also said by the doctor who phoned on Friday. He has upped the basal amount and will review next week.

Touch wood, things are ok at present. We have a meeting at the school tomorrow afternoon with teachers and our team to discuss care plan. I think sending her back to school is going to be a huge deal. It nice to get back in to “normal life” but Id be lying if I said I wasnt very anxious about that.

So far I have been comforted by the fact that at first it was just a whirlpool of emotions and that we just felt like what do we do. Its feeling at the moment more like a sense of there is support, on this forum, in the community, online and that we are not as alone as we first thought. The only part of that which still working on is linking my daughter up with other children her age group in the same position, thats a work in progress! Although there is an event in October I believe. Diabetes Together Conference that could be good to go to!

Its certainly better now than it was a week ago and certainly all we can do is take each day as it comes and manage the best we can, but things are ok at that moment snd thats the main thing.

Thank you all so much for your responses it really does help!!
 
Our team do an annual event for each year group with fun activities and diabetes education so that may also happen in your area. That’s a good way to meet other people. There may be parent meet ups too. Although a lot of things got badly affected by Covid and petered out then. Do speak to your team though about what there is locally.
 
Warren1981 said:
Touch wood, things are ok at present. We have a meeting at the school tomorrow afternoon with teachers and our team to discuss care plan. I think sending her back to school is going to be a huge deal. It nice to get back in to “normal life” but Id be lying if I said I wasnt very anxious about that.
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Fingers crossed that all goes smoothly, and the school are supportive and responsive if there are any hiccups.

Kids are amazingly resilient, and hopefully she’ll sail through and even (maybe?) slightly enjoy the cyborg-ness of cool wearable tech. It can be a tricky thing where some kids just want to be ‘like everyone else’, but personally I think it can be an advantage to have a bit of uniqueness if you are able to wear it with confidence.

I’m reminded of this nifty animation “Diabetes makes you stronger”. Sometimes it’s not about the things that happen, as much as how you respond to them?

 
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