What to expect -19yrs son newly diagnosed

[Littlefoot]

Hi all, am parent of only 3 days in to 19 yr old son being diagnosed with type 1 Diabetes. He is home now after 2 days in hospital to stabilise him -all sudden so we are having to get to grips with it very fast. Which am doing just about but one thing I am not sure about _ pl advise.:

He was obviously very tired in the run up to the crisis and diagnoses , lost 8 kg in a few days but is back up to what before he was but is still below expected weight for age, stature etc ....

He is still very tired..... Do I treat him like he is convalescing and if so how long should I expect this to take and his energy to step up? I understand that this might all depend on how well he regulates the insulin/ food etc so I should be guided by what he feels up to? Wake him up for meals etc and blood tests and insulin id be quite interventional like the nurses are?

It's just that ediabetic nurse said he should look to get back to work after a week At home so am thinking he's really got to get to grips with this quite fast to stay safe.

Can't find any useful guidance on this - any help / hints/reliable info much appreciated please.

Many thanks
Littlefoot

 

[Redkite]

Welcome to the forum and sorry to hear about your son's diagnosis. I highly recommend you get yourselves a copy of this excellent book by Ragnar Hanas:

https://www.amazon.co.uk/Type-Diabe...etes+in+children+adolescents+and+young+adults

It's normal to feel fatigued when blood glucose levels are high, as the body's cells cannot use this glucose for energy (due to insufficient insulin). The doctors are likely to be cautious at first with doses, because sometimes in a newly diagnosed person, the beta cells in the pancreas can recover temporarily when insulin injections are started (known as a "honeymoon period"), so they want to avoid him having lots of hypos in the first few weeks. He should monitor his BG levels and keep in regular touch with the diabetes nurse, so that if his levels are persistently high, adjustments can be gradually made to the insulin dose. It's early days and he's bound to be exhausted I'm afraid, but hopefully will regain his old energy when BG levels are closer to normal range most of the time.

 

[Northerner]

Hi all, am parent of only 3 days in to 19 yr old son being diagnosed with type 1 Diabetes. He is home now after 2 days in hospital to stabilise him -all sudden so we are having to get to grips with it very fast. Which am doing just about but one thing I am not sure about _ pl advise.:

He was obviously very tired in the run up to the crisis and diagnoses , lost 8 kg in a few days but is back up to what before he was but is still below expected weight for age, stature etc ....

He is still very tired..... Do I treat him like he is convalescing and if so how long should I expect this to take and his energy to step up? I understand that this might all depend on how well he regulates the insulin/ food etc so I should be guided by what he feels up to? Wake him up for meals etc and blood tests and insulin id be quite interventional like the nurses are?

It's just that ediabetic nurse said he should look to get back to work after a week At home so am thinking he's really got to get to grips with this quite fast to stay safe.

Can't find any useful guidance on this - any help / hints/reliable info much appreciated please.

Many thanks
Littlefoot

Hi Littlefoot, welcome to the forum 🙂 Very sorry to hear about your son's diagnosis. Your body can take quite a beating when first diagnosed, so it's not unusual to need time to recover afterwards - it's not a straightforward task suddenly having to 'think like a pancreas' and learn how to regulate your blood sugar levels, as well as the physical effects that led up to diagnosis. As suggested, it's likely that it will take a few weeks to get the insulin doses worked out properly so it's possible to experience high and swinging blood sugar levels, both of which can leave you feeling tired and unwell.

What job does he do? A lot will depend, I think, on how ill he was at diagnosis as to how soon he will feel capable of returning to work. In addition to the physical effects, this is of course a huge change to take in, and again swinging blood sugar levels can affect mood, making you more emotional than you might otherwise be. How does he feel about it? I would also highly recommend getting a copy of Type 1 Diabetes in Children Adolescents by Ragnar Hanas, it is very well-written and covers all aspects of living with diabetes and should help to dispel any myths or worries he has (and you too, of course!).

I think his work need to be aware that this is not like having a bad cold or something, it will take time for him to adjust - a phased return to work might be good if possible. The Diabetes UK Careline service should also be able to help with advice and resources:

https://www.diabetes.org.uk/How_we_help/Careline/

Please ask any questions you may have and we will be very happy to help! 🙂

 

[Littlefoot]

Thank you both for a speedy reply- has set my mind at rest.
His work is just temporary - he took a break from his 1st yr at Edinburgh unie ( suspended till this September if he wants to return) with anxiety and with it the weight loss and tiredness so goodness knows if the diabetes had set in motion back then and much of his anxiety was down to the struggle with just coping with physical symptoms - the anxiety/ depression is being treated with meds - so he hasn't been a great place mind and body since he came home again at least October 2015.That said he seems so far to being gun Ho about taking the injections - I think that's the easy bit for him.

The work is weekend evenings (20 hrs) until early hours of morning at pub; plus extra daytime work one more flexible basis with life guarding. The pub work doesn't seem a very good idea physically now with the diabetes but he likes it for the social interaction - otherwise he'd be pretty cut off from people - all his friends are at unie and home - well it's us boring parents!! I've encouraged him to try to not worry about work for now and get his strength back. If ther work gets taken away form him so be it- he'll easily get more work once he's fit. And then to maybe seek more routine work - even out - but less difficult shifts.

Poor boy just when he was getting on top of his mental health challenges, getting work, making friends, even got a new girlfriend and expanding his world again, then this diabetes hits him - so I'm a bit worried about how to read the physical illness and distinguish between this and his mental struggles - which frankly even the fittest person I think would struggle with what's been thrown at him at 19yrs old.

Think for now I'll take on board what you've both said and see how we get on - can speak to diabetic nurse on Tuesaday once bank hols gone. And also get the nutrionalist sorted. We do feel a bit bereft of a support for now till Tuesday so this forum has been brilliant!!!

Littlefoot

 

[Northerner]

It is possible that the symptoms of diabetes were contributing to his mood problems long before diagnosis. With hindsight, I had had problems for about 18 months prior to diagnosis and things got much better once I was diagnosed and achieved stable blood sugar levels. Perhaps it's a case of trying it and seeing how he gets on at work, if he's keen to return? If the work is physical it is more likely he will suffer low blood sugar levels (known as 'hypos'), but generally these are easily treatable with a couple of jelly babies or similar (in a pub there will be no shortage of full-sugar drinks also!). You do need to plan ahead a bit more, things like remembering to carry your insulin, pens and blood sugar meter and strips around (a lot of people find a pencil case is a good case to get to keep things together), hypo treatments, predicting periods of physical activity etc. He'll make mistakes, but hopefully learn from them! 🙂

 

[SB2015]

Welcome Littlefoot

Once your son begins to get to grips with his Diabetes he might find it useful to see what support is available at Edinburgh Uni if he chooses to return. He won't be the first to have had a second go at starting university. It is a big step for all of them and takes time for people to settle in.

As Northerner has suggested is very possible that the difficulties he has had could have been due to the build up towards this diagnosis. The destruction of his insulin producing cells (beta cells) will have started up to a year ago, and the dignosis happens when his pancreas finally gives up making any insulin.

I hope that he starts to feel better and finds the resources that Northerner has suggested useful now and later on as he starts to understand things a lot more

 

[trophywench]

Yes - and highs as well as lows actually affect your brain function, and can make emotional stuff feel worse. (Bit like the difference between being a 'happy' drunk and a morose one.) So chances are once he's sorted out a bit, he should feel better mentally as well as physically.

No Way Pedro could I have gone back to work after only a week. I was given a month straight off anyway!

 

[Littlefoot]

Really helpful to know about the fact that things would have started deteriorating about a year ago ...... Might help him put things into perspective as this illness and it creeping up on him explains so much.

He ended yesterday feeling emotionally a bit better. I think just getting through the day and figuring what he was eating and his insulin started to help him feel in control and maybe a bit more confident. So hoping today a bit better again.

All the tips you are all giving me are brilliant - can see how to support him - the more I know the more I can suggest.

He's started dipping into various books - I cleared out the library! And I've ordered the one northerner suggested. Saw related books on calls/carb counting and GI. .any tips please on this so I can but the right foods and cook the right meals with right amounts ( luckily we eat fairly sensibly so I think will only need a few adjustments - although as sons appetite has been pants for over a year it's now hard to tell how much he needs.) The biggest challenge yesterday was knowing what to eat? And how much. The docs said just eat as he is well under weight. He knows that ultimately he'll need to adjust his insulin to handle this but he is a bit concerned to do this so so early on without the nurse guiding him.

So for example after a slow start in the morning and quite tentative about what he ate , by late afternoon after a good lunch his appetite climbed gradually through the afternoon to early evening just before dinner at 7pm and only levelled off after a good evening meal. He checked his blood glucose a lot throughout to try to understand how it went up and down before and after food - the glucose count climbed too but came back down after the evening meal, although it was 10 and he'd started the day at 4 ( his target is 4-7). Any ideas/ tips /reading please to help us all understand this better?

Many thanks

 

[Northerner]

Very early days yet to be drawing many conclusions from his numbers as his insulin doses - particularly his slow-acting (basal) - will probably need further adjustment. Getting this right can improve all the other numbers, so once you have hit on the right dose things should improve generally 🙂 Although, be warned that doses are not set in stone and can change sometimes for unfathomable reasons!

After I was diagnosed I was absolutely ravenous 😱 My weight had dropped dramatically - I had a BMI of around 17 😱 It did take a while to regain the weight, despite eating much more than I do now. With hindsight, I think that the first few months are more about avoiding the extreme highs and lows rather than expecting to get the numbers nicely 'in range'. Gradually, with experience, you see the patterns and become familiar with what is likely to cause problems.Personally, I had more problems with low blood sugars than highs in the first 6 months or so - I think this was because I was more scared of high numbers and found marginal lows (e.g. between 3-4 mmol/l) fairly easy to deal with. Some people go the opposite way and build up a big fear of dropping low, but this can lead to then maintaining much higher levels which can then have long term consequences because of the increased risk of complications. Gradually, I have 'fine-tuned' things and most of my readings these days are in range, although I have never stopped learning! 🙂

If you want a quick guide to carb counting, have a read of the following from Diabetes UK:

https://shop.diabetes.org.uk/usr/downloads/Carbs-Count-2012-reduced.pdf

Regarding diet - the restrictions are much fewer when you can use insulin to match carbohydrate intake, but it's important to know how the food will affect you even so. I favour following the principles of the GL (Glycaemic Load) diet, which describes how to select and combine foods that will have a slow and steady impact on blood sugar levels. The GL Diet for Dummies is a very good introduction 🙂

 

[SB2015]

Good to hear how well your son is doing already.

Things will be wobbly at the start as his body adjusts, tops up the stores, ... So doses will change. The Carbs and Cals book is a good source of info. It includes pictures of portion sizes with the carbs for each, so it gives you an idea of how many you are eating.

 

[Alba37]

Hi Littlefoot. I'm so sorry to read of your son's diagnosis It's really a difficult age. At 19 they don't normally get the same support a younger person gets. I often hear of young people in their late teens being diagnosed, and it really isn't easy for them. Diabetes is complex to manage and even after 10+ years I am still learning. My son was diagnosed just after his 13th birthday and is now 23, he's at Strathclyde Uni. Your son can register with the disability service if he decides to go back and will get special accommodations. My son also struggles with depression, but I suspect how your son was feeling leading up to diagnosis will have had an impact of his mental health.

How are things going now?

 

[Mel]

HI
Sorry to hear about the diagnosis. Edinburgh Universisity are good for support I have a child with Type 1 there, the university medical centre has a a doctor who has a special interest in diabetes and in freshers all the diabetics go and meet the staff and link up with each other. Getting perscriptions has been really easy better than home!.
Sharps bins- in Scotland you only get small ones, but if he's on injections that should be fine, if he goes on a pump they often send them out to you anyway and we have had no problem getting them sent to Edinburgh
Student accomadation - he gets a single room guarenteed and if you tick you are diabetic on the form you get a small fridge for your insulin to havein your room. If he wants ensuite he will get that too
Exam wise student disability sevices are very helpful and its noted on her learning system that she is allowed to eat, etc etc in lectures, so that all the staff lecturers and tutorial know. I believe she could have had her car up there but to be honest everyone walks every where so she does too.
The only downside is the GP has put a fair amount of pressure on her to change care to Edinburgh to make it easlier for them but you just have to say no frimly if you want your care to remain in the same county as home
Hope you find this helpful