Diabetic teen?

[FuckingHateRats]

Posting in chat for traffic, sorry.

I'm taking him to the doctor's tomorrow, but I'm just hoping someone might be able to share experiences of their own I can compare.

My son (15) is KNACKERED. Falling asleep multiple times a day, really tired and lethargic when up. He's so thirsty - gets up during the night to drink, and probably drinks 3-4lt of water a day. He also feels really ill after big meals - the last two times we've eaten out we've had to leave early because he's felt like his heart is racing, he feels really "overwhelmed" (his words), and he's really spacey.

I've got coeliac disease so I'm going to ask him to be tested for that too, but we also have diabetes in the family. We're so worried about him - I think my husband would drive him up to A&E if I'd let him.

Does anyone have any experience of diabetes in a teen, and did it manifest itself like this?

So glad things are starting to improve. I just read your OP and was going to say he had every symptom that I had before I RTFT.

It's going to be a difficult time for him - it's such a change to your lives. It's hard enough for someone my age let alone a teen. I would highly recommend getting in touch with Diabetes UK for some help and support for him.

Sounds like he's a star if he's doing that already. Good for him! It's a shock for you all and will take adjustment but you caught it right and he will be absolutely fine once he gets into the swing of things. Make sure you give yourselves some slack as you adjust and get used to everything.

Definitely see if they have a buddy scheme - someone of a similar age who is a year or more on, really helped friends dd

My son was in exactly your son's position at the beginning of summer and was also DKA when admitted. I felt AWFUL at not connecting the dots quicker and totally relate to what you said about how gaunt your boy is under the hoodies. My son was 17 at diagnosis and turned 18 not long after. He has taken it in his stride and been on holiday, out drinking etc and has the sensor in his arm to measure his bloods (game changer!!).
I won't pretend I don't worry myself sick because I do, but school have been great and he gets access arrangements for his A Levels do he can check bloods etc. I got very tearful reading your OP because I knew it would be a T1 diagnosis and I wanted to hug you...I was heartbroken when my big strong boy cried in A and E with the shock of the diagnosis and the urgency of the drips and tests. I'm rambling now but I just resonate so much with your post.

I’m type one/ these are all the symptoms I had/ go a and e now

Well done your ds. Being tech/numbers minded is a definite advantage with Type 1 diabetes. Bonus if he’s into statistics!

Just a small update. All going well today, he's coming home after dinner tonight.

He's managed so well with the whole process and calculations that they're skipping the carb targets for the first couple of weeks and letting him crack straight on with ratio injections. He started calculating his injections using ratios yesterday and is doing brilliantly.

He looks so much better. So much more energy, more colour in his face. We just need to work on getting some fat on him now!

Thanks everyone for their well-wishes and no-nonsense advice on Monday. It was incredibly helpful.

That's great news, OP!

He sounds like he's getting the hang of it - and there are bolus calculators to help with the maths (eg mylife) and apps for carbohydrate counting eg nutracheck.

He'll definitely gain weight (likely to where he was before diagnosis) quickly & have a bigger appetite than usual.

Just be aware of the honeymoon period in the near-ish future as things can change.

Great news. My ds was similar adjusted really well and took it in his stride. He carried on doing well at school and is now at uni living a great life. You will always have that worry but you do adjust to the extra risk. Sleeping though the night won’t be on cards for a while. The tech makes it much easier. He’s upfront about telling his friends and uni flatmates so I know that his mates will look out for him on a night out. DS just treats it as something extra he has to do and fit into his life, it doesn’t stop him doing anything he wants - he just has to be more organised about it.

Fantastic update OP, im glad hes doing well. He will put the weight back on quickly now that his body is starting to get back to (its new) normal.
My son was diagnosed at 16 and was incredibly resilient, I think he took it better than me. Make sure you have someone to talk to about it too. Mine also got the coeliac diagnosis shortly after the T1 as they test for that and thyroid in routine bloods at the hospital. Just for comparison, my son said if he could take one of them away, he would live with T1 if that meant the coeliac could be removed. His control is perfect and this is reflected in his routine Hba1c tests. He is now at uni and living a completely normal life. Good luck to you all.

Brilliant news. I hope the night went well. Good to hear about the colour returning - he will do a steady job of making up the weight now.
glad to hear the progress with dosage too.
Early days, but do consider glucose monitoring tech. If he’s not going to use a pump he could have a CGM which will tell him his levels at a glance - really helpful in managing things and cuts down on finger pricking.

Onwards and upwards!

Glad to hear this. Hopefully you have some good friends to chat to about it too. Or can meet some other parents for support. Best wishes.

He's getting a Libre device next week, which will cut down on the fingerprick testing. We haven't chatted pumps yet but it's on our radar.

He's put on 4.5kg since Monday! He must have been so dehydrated.

It’s all sounding very positive OP!

The Libre cuts down finger pricks so so much. You only need to prick if you suspect a high or low really.

Great news, OP!

If you have time, take a look at Partha Kar on Twitter - he's a diabetes consultant (albeit in adults) and is really pushing the digital agenda.

If I had T1, I'd be pushing for a closed loop system - a Bluetooth connected pump & CGMS which communicate to give fantastic control.

Generally there is better funding/criteria for technology in paeds, compared to adults.

Of course you have a couple of years before that.

That’s cracking. You’re doing so well. Great to hear how much better he’s doing and that a libre is in the works. My lad is going into the medtronic 770g with CGM soon which is fairly closed loop. I have friends with children on the tslim with dexcom who are doing amazingly. I guess it depends what your clinic use. Brilliant that it’s being raised.

happy 2023!

Hi OP. I was your son 8 years ago - I have to be honest when I read his symptoms I knew it was type 1. Poor lad, I remember the insatiable night time thirst, it was torture. The good news is he will now blossom before your eyes as insulin is wonderful stuff, he will put on weight and look healthy again and he will feel like he’s had a power surge!

Meal wise I would recommend the book Carbs and Cals if you haven’t heard of it already. It’s quite a simple book with photos of everyday meals and food items and how many grams of carbs are in them. It’s a good place to start.

Mentally I bet he’s all over the place at the moment. It’s a lot to take on board. He will be okay and he will figure out what works for him in terms of managing the diabetes, he’ll be feeling a lot better in a couple of months.

The Libre is incredible and I’m glad to hear he’s on it rather than all the faff of the finger prick - he’s definitely got the best start.

Try not to worry too much yourself. When I was diagnosed I was living alone and managed, he will do extra well with his parents there to help him. 💐

So glad to hear your DS is feeling better OP.

Our DS3 (age 12) was diagnosed in August. Massive shock but he had told me about three weeks prior he thought he had it as he'd googled 'clear pee'. I dismissed him to my absolute horror later on. We were abroad at that time, very hot country, and he didn't like the food (very fussy eater) so I thought he was drinking to fill himself up. He wasn't particularly tired, he did a 5 mile bike ride the day before diagnosis (!) and I only noticed how much weight he'd lost off his belly when his big sister saw him after 3 weeks away and mentioned it. Still thought it was because he hadn't been eating and had shot up in height (he's 5ft 9 now so big lad and slim but sturdy. I only took him to A&E because we were joking about it and I told him to let me smell his breath and could smell pear drops which I knew was a symptom. Shock of my life that he was right all along. Felt horrific for weeks afterwards. Still do. Luckily he didn't need any drips despite his sugars being 39.9 and was straight on the main ward for 2 days for the jab and carb counting training.

We were told he couldn't have a CGM for 6 months and only with proof of 8 finger pricks a day. He wouldn't be eligible for a pump either as over 12 (turned 12 a month before diagnosis!). NHS fund the Libre. We've been self funding a Dexcom G6 and now G7 which has given great peace of mind. I researched it the night he was diagnosed! We didn't have it for his first week which was horrendous and couldn't sleep at all, just sitting in his room watching him. Now we sleep thank god!

The carb counting is a PITA but we're used to it now and he still has McDonalds. In fact his sugars stay more stable overnight when he has one or when we have pizza night (he eats a whole one!).

He has 'dessert' with lunch and dinner so he can add in sweets, ice cream and doesn't need to inject again if he fancies something.

Biggest thing for me has been having to buy sugar free cordial as I always actively avoided artificial sugars prior to this.

We don't have diabetes in our families, they're very big too.

It is a lot to take in. I remember switching with DH on the 2nd day DS was in hospital and going home, announcing to our older DC I was going to cry for a bit in private and not to be alarmed, then I let it out. Can only take away from it that thank god it was caught, could have been much worse, its manageable, and he can live a full life. Not glossing over that it's stressful, frightening, etc but it's survivable. I sought out stories of other Type 1s living to old age and there are plenty of them. Lots of Type 1 teens on Tik Tok too.

I wish you and your DS strength OP. You are not alone. There's s great Type 1 Mums WhatsApp group for my area that I was signposted to by the diabetic nurse. That has been a big help just to know we're not alone.

Also his school have been great. They have a few other Type 1s so luckily they were aware.

Oh and if you have an iPhone you can download the Carbs & Cals app. I think it was about £38 for year. Well worth it. I don't think you can get on it android though.

My 8 year old was diagnosed yesterday, I’m currently in hospital lying next to him. I’m devastated and know nothing about this condition but learning fast .
There is no family history of this and to say I’m still in shock is an understatement.
My son played in 2 football matches the day before I brought him in . He showed no symptoms only he used the toilet 7 times during the night which was unheard of . I was hoping it was a urine infection.
right now as the tears won’t stop falling I genuinely don’t know how I’m going to get through this .
I just don’t want his life to change and hope we will find a new normal. I’m looking for reassurance that he can continue to do everything any other 8 year old can do and return to his beloved football that he is so good at .

@Sh7

Poor you, just posting to offer a bit of support.

I hope you manage to get some sleep.

He and you will get through this. Link to Ed Gamble about his diabetes.

www.rte.ie/lifestyle/living/2022/0613/1304498-comedian-ed-gamble-on-diabetes-i-was-diagnosed-aged-13/#:~:text=Comedian%20Ed%20Gamble%20has%20got,as%20his%20'comedy%20superpower'.

Sh7 I'm so sorry you are in this position - hugs to you both.
My teenage son was diagnosed 4 yrs ago, I'm awake cos of the dog & have just checked my sons levels from bed, on an app on my phone sent from his sensor, his pump is working away keeping him level.

He was abroad for a week on a school trip at the end of the year & ok most of our contact was 'what are you doing next' & 'what are you eating' rather than 'are you having fun' but he went, he was fine & he had a blast!

He plays football, is a goalie, cup match this weekend [fingers crossed] Another boy with t1d in his school is in a pro team affiliated development team.

I mention all of this to make the point that life does go on, aspects of both your lives will change but there will definitely be a new normal & there will be precious little he can't do.
There will be lots of learning coming your way as parent, ask all the questions, find the local & online support mentioned above, push for the tech, DO NOT BLAME YOURSELF!
Best of luck 💕

@Sh7 DD was diagnosed at 8 as well, a couple of weeks before her 9th birthday. Her main concern was her party! There's a huge amount to take on at first; just take it one day at a time. DD is now 13 & brilliant at managing her blood glucose, and had a normal, full & active life. Camping, hiking, hanging out with friends, sleepovers. Yes, there's a whole lot of maths but you'll get the hang of it sooner than you realise!
Best of luck to you & your son.

Sh7, I'm sorry you have had to join the T1D club. My son was diagnosed 2 years ago when he was 9. It is truly life changing. But you will adjust and life has to carry on. I certainly grieved for what he had lost.
There is a lot to learn and some rocky days ahead. But you will all learn. He will need his family and support. So put on a brave front and face this together full on.

There is a Type 1 diabetes family UK facebook group I recommend you join.

The Facebook group is called -
Parents of children with type 1 diabetes in the UK
It's a great support network 😊