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Newly diagnosed 15 year old son

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

Lindsey#newbie

New Member
Relationship to Diabetes
Type 1
Where to start... My son was diagnosed, after I let him nearly waste away before me, on Sunday... He's bounced back and I'm kind of getting my strength to get on with it from him!!
So many concerns.... Mainly the fact he's lost so much weight he's so hungry at the time. Luckily we're all sporty, vegetarian and thought we knew a bit about food and energy etc.... Now finding out we know nothing, or simply not enough?!
He's on strict 3 meals a day now until meeting with his dietician next week... Bloods bouncing around... Just feel a bit heart-broken yet clearly everyone on here is so amazing and full of facts....
I feel out of my league and struggling to retain any info..... Just feel like a bit of a failure at the moment...
 
Yes... Felt really positive yesterday... Having a really wobbly moment.... We're vegetarian and I'm stressing about how many grams of carbs we should average per meal... We're hitting between 70-110 but I'm now worrying that tea tonight is looking much higher than that?!... Is there even am average? Maybe I'm worrying too much.... He's lost over a stone and wasn't big before hand.... Disgusted that I missed that
 
As the saying goes, everyone has perfect hindsight. 🙄

It's all too easy to miss D symptoms or mistake them for other things such as "just growing up" — we here have heard many such stories. So don't beat yourself up about this; doing so won't accomplish anything, the important thing is to move forward.

As you have probably already gathered, this is a great place for mutual help and support, or just having a rant if you need one. 🙂
 
Lindsey#newbie said:
Where to start... My son was diagnosed, after I let him nearly waste away before me, on Sunday... He's bounced back and I'm kind of getting my strength to get on with it from him!!
So many concerns.... Mainly the fact he's lost so much weight he's so hungry at the time. Luckily we're all sporty, vegetarian and thought we knew a bit about food and energy etc.... Now finding out we know nothing, or simply not enough?!
He's on strict 3 meals a day now until meeting with his dietician next week... Bloods bouncing around... Just feel a bit heart-broken yet clearly everyone on here is so amazing and full of facts....
I feel out of my league and struggling to retain any info..... Just feel like a bit of a failure at the moment...
Click to expand...
Hi Lindsey, welcome to the forum 🙂 Very sorry to hear about your son's diagnosis, but please don't blame yourself! I nearly let myself waste away before I sought help and got diagnosed - and I was 49! 🙄 It's easy to put the symptoms down to other things, particularly in a growing lad. The good thing is that he is now getting the help - and most importantly the insulin - he needs 🙂 It's hard to describe how good it feels to get that insulin that your body has been lacking - I felt sooooo much better almost immediately, and like your son I was also ravenous! It's a perfectly natural response when your body is finally able to use the energy and food you are giving it. For me, I would say the really hungry times lasted maybe a month or so, then I started to quieten down a bit 🙂 I slipped from around 70kg to 50kg 😱 It took a while to put the weight back on, but I got back to a healthy weight eventually, but it may take time.

Try not to be too alarmed by his blood sugar levels at the moment as well. It will take a little time for things to settle down and for the right doses to match his requirements to be worked out. What insulin has he been given? How is he coping with the injections? One thing that will really help is if you can get a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - considered to be the 'bible' for children and young people. It will help to answer many of the questions you may have, and help you understand the challenges ahead and how to cope with them. It will also help you to take in some of the information given to you by the doctors and nurses, and perhaps help to prompt questions for them 🙂

Something you might like to read for yourself is Adrienne's essential guide for parents of newly-diagnosed children, that will hopefully help you at this difficult and stressful time. It's a serious condition, no doubt, but it can be managed very well, and doesn't need to stand in his way. Treatments, technology and knowledge are improving all the time - even in the 8 years since my own diagnosis I've seen some significant improvements. Things will get easier in time, although there will always be new things to learn 🙂

There is a very steep learning curve, but please try not to become overwhelmed! There is always plenty of knowledge and support here to draw on, and any questions you have, we've probably encountered before - so if it bothers or confuses you, please ask! 🙂
 
The book Northerner has suggested is brilliant for the beginning and as a continual reference. I am still learning from it nearly nine years in. It is a steep learning curve and there is a lot to take in. Just take it one step at a time and don't be afraid to ask questions.

I had never looked at the carbs in a meal before diagnosis. I was and still am very active and had a good diet which matched what I needed. Now I can tell you the carbs for so many foods, as it has just become part of the new normal for me and many others. T1 need not stop your son doing anything, it just takes a bit of organising and planning.

Lots of people here to help you, so just ask
 
Hi Lindsey

Try not to beat yourself up about it. These things happen. I was in a similar position 30 years ago and almost wasted away, my Mum felt the same as you. In the beginning there is a lot to take in, adjustments to be made etc. The good news is over time it will become routine and you can live a pretty much normal life with T1. I'm fairly sporty and a veggie too and T1 has not stopped me taking part in sport or made me alter my diet.
 
Lindsey#newbie said:
Where to start... My son was diagnosed, after I let him nearly waste away before me, on Sunday... He's bounced back and I'm kind of getting my strength to get on with it from him!!
So many concerns.... Mainly the fact he's lost so much weight he's so hungry at the time. Luckily we're all sporty, vegetarian and thought we knew a bit about food and energy etc.... Now finding out we know nothing, or simply not enough?!
He's on strict 3 meals a day now until meeting with his dietician next week... Bloods bouncing around... Just feel a bit heart-broken yet clearly everyone on here is so amazing and full of facts....
I feel out of my league and struggling to retain any info..... Just feel like a bit of a failure at the moment...
Click to expand...
Hi Lindsey
Warm welcome to the forum.
 
Lindsey - look how long I've been D - and I STILL learn something almost every flippin day.

This is a marathon, not a sprint. Had you realised you needed to be THAT sporty? LOL Or rather, Tyler needs to be in this case - you just need to run alongside for as long as he needs you to, until he gets his second wind and leaves you standing! Like every other thing in a child's life - you can't imagine they'll be taller than you and give you lip, when you first hold em in your arms, can you? At the same time why are you attempting to rear them to be sensible adults and be independent, if you don't in your heart of hearts also know they'll branch out on their own eventually - a period that marks your success as parents! LOL
 
Someamazing wise words and support... What a difference a week has made!! From desperately thin to 5lb heavier and got his quirky attitude back.. Even let he have the honour of being the first to inject him in his Butt ... for some reason this made me feel amazingly proud.
We've learnt so much in week and a few things are actually being retained in my mind (after Tyler was diagnosed last Sunday I can honestly say I can barely remember Monday and Tuesday)... I'm concerned about keeping food varied and exciting as I've never been very adventurous and sometimes he doesn't fancy what's offered....
The BIG concern, which is a shame as he's coping so well, is his eye sight!! He's really stressing and difficult to reassure even though it's been explained to him that this is normal... How long should he expect to have blurry vision?...
Feeling very proud of him today and he picked a nice, compact, shoulder bag today to put all his bits and bobs in for when he goes out.. Nice to see him plan ahead ☺
 
Lindsey#newbie said:
Someamazing wise words and support... What a difference a week has made!! From desperately thin to 5lb heavier and got his quirky attitude back.. Even let he have the honour of being the first to inject him in his Butt ... for some reason this made me feel amazingly proud.
We've learnt so much in week and a few things are actually being retained in my mind (after Tyler was diagnosed last Sunday I can honestly say I can barely remember Monday and Tuesday)... I'm concerned about keeping food varied and exciting as I've never been very adventurous and sometimes he doesn't fancy what's offered....
The BIG concern, which is a shame as he's coping so well, is his eye sight!! He's really stressing and difficult to reassure even though it's been explained to him that this is normal... How long should he expect to have blurry vision?...
Feeling very proud of him today and he picked a nice, compact, shoulder bag today to put all his bits and bobs in for when he goes out.. Nice to see him plan ahead ☺
Click to expand...
I was a bit alarmed about my eyesight too, but it took maybe two to three weeks before it started returning to normal. It will happen, but I'm afraid like a lot of things to do with diabetes, you have to be a little patient 🙂

Great to hear things sounding so much more positive for you all! 🙂
 
Welcome to the forum Lindsey. 🙂
 
Lindsey#newbie said:
Where to start... My son was diagnosed, after I let him nearly waste away before me, on Sunday... He's bounced back and I'm kind of getting my strength to get on with it from him!!
So many concerns.... Mainly the fact he's lost so much weight he's so hungry at the time. Luckily we're all sporty, vegetarian and thought we knew a bit about food and energy etc.... Now finding out we know nothing, or simply not enough?!
He's on strict 3 meals a day now until meeting with his dietician next week... Bloods bouncing around... Just feel a bit heart-broken yet clearly everyone on here is so amazing and full of facts....
I feel out of my league and struggling to retain any info..... Just feel like a bit of a failure at the moment...
Click to expand...
Welcome Lindsey, as a parent myself it is hard to et your kids suffer. It will get easier as you learn every day but keep at it & it will pay off 🙂. Take as much info in as you can 😉. (T1 for more than 50yrs )
 
Mine was orrible for about 4-5 weeks - my eyes wouldn't focus properly and being as I was a clerk before they invented computers that could be used wherever - we only had mainframes then - there was no way I could do my job. I also couldn't read, couldn't watch telly, couldn't knit sew or crochet - and I was bored as hell sat on my own all day long twiddling my thumbs. (BTW - no daytime telly to speak of then either!) Aargghh - if I'd had to stay at home very much longer - I'd have gone mad.
 
Lindsey#newbie said:
The BIG concern, which is a shame as he's coping so well, is his eye sight!! He's really stressing and difficult to reassure even though it's been explained to him that this is normal... How long should he expect to have blurry vision?...
Click to expand...

I also had blurry vision when diagnosed, and had even ordered a pair of replacement glasses. The optician did not charge me for these when I told him of my diagnosis and even apologised as he thought that he should have spotted the problem since this is so common at diagnosis. I was told by consultant to wait of a month before going back to opticians for another eye check and to just use old glasses until things settled down.

Reassure him, as it will settle.
 
Welcome Lindsay. Don't feel guilty - I hadn't realised how much weight my son had lost until after diagnosis (he was 4) but now I can hardly bear to look at the "before" photos of him. It's normal to be starving when you first go on insulin after having literally none in your body. Let him eat his fill and don't worry too much about his BG levels just now. Keep a record of carbs eaten, insulin given and BG levels, and in a week or so the diabetes nurses should be able to use this data to suggest a suitable insulin:carb ratio for him. Then he will be able to eat what he wants and match it with an appropriate dose of rapid acting insulin (assuming that's what you've been given?), instead of having to stick to a rigid meal pattern.

You might also like to join the Facebook group CWD - Main Group for advice and support from other parents.
 
Welcome to the forum...you will learn loads on here. I'm 6mths in with my 8 year old son...and can thank this forum for great tips and quick responses...
I'm sure your crash course on carb counting was in Chinese..i know mine was...
It felt like i had to sit an exam on a subject i hadnt studied.....i had to pass as flunking would mean my son would be in ICU...not an option...
Amazing how much information you will retain under stress...x
 
Thank you so much for your responses... Had a visit with Tyler's fantastic dietician on Wednesday and have started Carb-counting.... Didn't think it would sink in but now seems fine (Ty just got it straight away and has been doing it himself with a double check from Mum and Dad.....
What we still don't fully understand is....
His bloods are now either 6.5 or 5.1 or around these readings when he tests it just before his meal (plus he has his correction dose of its over....).... So if he's about that each time he has a meal do we even check other times?? Won't his bloods be high between meals but it just needs to be right at his meal time?.... Are we right in thinking we don't even need to check it between meals now and this is the goal we should be aiming for...... A 4-7 JUST BEFORE YOUR NEXT MEAL?
Was a really big deal tonight as his mate its staying over and actually felt really brave ordering a pizza for them and a very small handful of fries (not ideal but he's had a rough 12 days.... God we've learnt so much I'm amazed!!)
This forum is going to be a life-line for us x
 
Hope you are all feeling really proud of your achievements so far. 🙂

Now you are carb counting, things should be better as you can match your insulin to your carbs and can have treats like the pizza. GreT with christmas around the corner.

There is a week-long education course for Type 1s called DAFNE which would advise you as you said, to test before your meal and make any adjustment then, as apposed to testing after two hours etc. this is because, on MDI, your fast acting insulin will last between 4-5 hours so you aim to get back to your target numbers eg between 4-6 after the four hours. if your blood sugar is above target then you can add a correction dose onto your insulin requirements for your next meal. That being said, there are plenty of folk on here who go for tighter control and want to get their blood sugar back in range before then. This is a great goal, but can lead to more hypos.
 
Lindsey#newbie said:
So if he's about that each time he has a meal do we even check other times?? Won't his bloods be high between meals but it just needs to be right at his meal time?.... Are we right in thinking we don't even need to check it between meals now and this is the goal we should be aiming for...... A 4-7 JUST BEFORE YOUR NEXT MEAL?
Click to expand...
This is fine for now - if you are already achieving it at this early stage, that's excellent 🙂 As time goes by and you gain more confidence and experience it can be worth testing again an hour or two hours after eating in order to see whether the food is 'peaking' a bit too high. When I was first diagnosed I considered everything to be fine as I was always in range prior to my meals. However, being a curious type I decided to do some one and two hour tests to see what was happening in the hours between meals. I was surprised to learn that with some meals my levels were rocketing up into double figures after an hour or so, then settling back down again over the following hours. This is usually due to the food digesting and hitting the blood sugar levels before the insulin injection starts to 'peak'. The skill then comes in EITHER choosing food that you find doesn't do this to you OR adjusting the timing of your insulin injection so that it can start peaking at around the same time as the meal. Discovering this takes quite a bit of experience and trial and error, so it's something to consider for the future, not now whilst everything else is so unfamiliar (i was at least 6 months diagnosed before I started doing this). So, for example, if a favourite meal spikes up to double figures after an hour or so, then injecting 15-30 mins prior to eating always the insulin to 'get up to speed' and more closely match the speed of digestion. The timing can vary between individuals, so it's an element of personal fine-tuning to consider for the future 🙂 Achieving steadier, smoother levels is better in the long-term as it is thought to place less stress on the blood vessels than a 'roller-coaster' 🙂

All sounds even more complicated, I know, but honestly it does become second nature surprisingly quickly 🙂
 
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