Parent of young adult

[Hells11]

Very confused, son 21 normal 21 year old rushed to hospital severely poorly and then to be given the diagnosis of T1. Information overload to say the least. Where do we even start? Day 1 home after 3 days in hospital and feel we have just been left to fend for ourselves. I know there will be lots of appointments for various things but it's all just so mind blowing for everyone in the family.

 

[silentsquirrel]

Very confused, son 21 normal 21 year old rushed to hospital severely poorly and then to be given the diagnosis of T1. Information overload to say the least. Where do we even start? Day 1 home after 3 days in hospital and feel we have just been left to fend for ourselves. I know there will be lots of appointments for various things but it's all just so mind blowing for everyone in the family.

Welcome to the forum! Hopefully some T1s will be along soon to offer better advice than I could as a T2.

@Northerner, might this get a better response if moved out of the Parents forum?

 

[HOBIE]

V sorry to here. I was 3 in the year England WON the world cup. A while ago T1. T1 is hard work at times but take it easy with carbs. Blood tests are the way to learn. A freestyle Libre is an excellent tool for learning what affects him. Good luck & welcome 😉

 

[Northerner]

Very confused, son 21 normal 21 year old rushed to hospital severely poorly and then to be given the diagnosis of T1. Information overload to say the least. Where do we even start? Day 1 home after 3 days in hospital and feel we have just been left to fend for ourselves. I know there will be lots of appointments for various things but it's all just so mind blowing for everyone in the family.

Hi Hells11, welcome to the forum 🙂 Very sorry to hear about your son's diagnosis, Type 1 can manifest itself so quickly it's always a shock Try to stay calm (easy to say, I know). The good news is that there is a lot of knowledge and excellent treatments available these days for Type 1 and things are improving all the time. Although there will be a big, and very steep, learning curve, things will settle down and start to make more sense 🙂 Although this is a serious condition it can be managed well and does not have to prevent him from achieving anything he sets out to do in the future - there are lots of 'ordinary' people like myself who live perfectly normal lives, it will just take a bit of extra planning in the future, but this will largely become second nature before long 🙂

I would highly recommend getting hold of 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 on insulin regimes. It covers ALL aspects of living with Type 1 diabetes and is written in a very readable, accessible style. It's not cheap, but do get the latest edition because, as I said, things can move quickly, and it is invaluable (personally, I think every newly-diagnosed Type should be given this book at diagnosis!) 🙂

What insulin has he been given, and how is he feeling now? He needs to keep in close contact with his team in these early days and weeks so that a good balance can be found between his food choices, insulin doses and lifestyle. PLEASE ask any questions you or he may have, there are loads of very knowledgeable, experienced people here who can help, and who will be happy to do so - no question is considered silly, so if it confuses or concerns you, ask away! 🙂

 

[Hells11]

Hi Hells11, welcome to the forum 🙂 Very sorry to hear about your son's diagnosis, Type 1 can manifest itself so quickly it's always a shock Try to stay calm (easy to say, I know). The good news is that there is a lot of knowledge and excellent treatments available these days for Type 1 and things are improving all the time. Although there will be a big, and very steep, learning curve, things will settle down and start to make more sense 🙂 Although this is a serious condition it can be managed well and does not have to prevent him from achieving anything he sets out to do in the future - there are lots of 'ordinary' people like myself who live perfectly normal lives, it will just take a bit of extra planning in the future, but this will largely become second nature before long 🙂

I would highly recommend getting hold of 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 on insulin regimes. It covers ALL aspects of living with Type 1 diabetes and is written in a very readable, accessible style. It's not cheap, but do get the latest edition because, as I said, things can move quickly, and it is invaluable (personally, I think every newly-diagnosed Type should be given this book at diagnosis!) 🙂

What insulin has he been given, and how is he feeling now? He needs to keep in close contact with his team in these early days and weeks so that a good balance can be found between his food choices, insulin doses and lifestyle. PLEASE ask any questions you or he may have, there are loads of very knowledgeable, experienced people here who can help, and who will be happy to do so - no question is considered silly, so if it confuses or concerns you, ask away! 🙂

Thank you so much for this, we are already learning as this morning (after scrutinizing his discharge notes from the hospital) we realised he had been using the wronglevels of insulin. Today his levels are a lot lower thank God. He has an appointment to see a dietician next week but still nothing yet from the diabetes clinic. (Trust me I will be screaming tomorrow) I know he is 21 and a capable young man but after last Friday's admission to hospital and this diagnosis, as his mum I will be on it.

 

[Matt Cycle]

Hi Hells and welcome to the forum. 🙂 I was a bit younger than your son when diagnosed 32 years ago but my Mum sounds like you - I she think was more worried than me. I can honestly say it hasn't stopped me doing anything - going to university, work, got children of my own - just ordinary everyday things. The first few days and weeks are difficult but it soon becomes routine. My DSN was an invaluable source of information (this was before the internet) and now there's always people on here to give advice. Levels will steady out in time, yes there will be ups and downs along the way but that's all part of the er..fun of living with T1.

 

[Hells11]

Thank you, just like your mum....you are still our children

 

[SB2015]

Thank you so much for this, we are already learning as this morning (after scrutinizing his discharge notes from the hospital) we realised he had been using the wronglevels of insulin. Today his levels are a lot lower thank God. He has an appointment to see a dietician next week but still nothing yet from the diabetes clinic. (Trust me I will be screaming tomorrow) I know he is 21 and a capable young man but after last Friday's admission to hospital and this diagnosis, as his mum I will be on it.

Welcome. It is a massive shock for both your son and you, but as Northerner said it is manageable.

The book by Ragnar Hanas is excellent, an easy reference book, and one I still go back to even after 10 years of this.

Diabetes is very daunting at the start, and takes some time to settle as his pancreas may still have some beta cells that are going to play along every now and then, after being given a rest by the injected insulin. So don’t worry if his levels aren’t all sorted straight away. It is hard being patient, but it takes time for the body to adjust after diagnosis.

Whatever questions you have just keep asking we will help in any way we can.

 

[trophywench]

Mothers! LOL

I was a healthy 22 yo and had been married for 15 months, living in the house my husband and I had bought, 20 odd miles away from my parents. My mother visited me on the second day I was in hospital and bugger me if the doctor wasn't explaining it all to her, rather than me! That did annoy me, even though I do understand that kids are always your kids however old they (and you! LOL) are - and to be fair my mom did say to him several times that she wouldn't be there to help me 99.9% of the time although 'of course I'm interested'. It wasn't until after that he started to speak to me as an adult really. So - please do take care not to get too involved ! Just be 'an interested listener' and support him from the sidelines where and when you can.

 

[Amity Island]

Very confused, son 21 normal 21 year old rushed to hospital severely poorly and then to be given the diagnosis of T1. Information overload to say the least. Where do we even start? Day 1 home after 3 days in hospital and feel we have just been left to fend for ourselves. I know there will be lots of appointments for various things but it's all just so mind blowing for everyone in the family.

Hi Helen, sorry to hear about the diagnosis. It's tough to deal with in the early days. Please see a copy of an old post I did on here below titled carry on regardless. Hope it helps you all.
When I was diagnosed I was in my last year at University. It was fairly sudden the way it happened. Over the period of a few weeks I started drinking ridiculous amounts of water, very quickly, squeezing the water into my mouth to try and quench the thirst. I had a blood test and a few days later, I was told by phone (followed by some tears of shock) to go straight to A&E. I always remember being at the hospital, the nurse shouting across them room as she was giving me my first shot of insulin, "another betty over here". I got my first and last visit from the diabetes nurse the next day, and from that day on I was self managing my diabetes. I was on a twice a day insulin, where you had too eat at set times and set amounts every day. I spent the next twenty years never really discussing it with any employers which I worked for. I didn't feel they would appreciate me having a serious condition.

It's wasn't until I attended a D.A.F.N.E course a couple of years ago that my eyes were opened after seeing how other people live with their condition with no concern for what others think. I thought this is how I want to be. To not worry about anything, or what people may say about seeing you inject in public. To be open with people is the only way really, especially when you consider this isn't a temporary thing your dealing with. As far as hypos are concerned, as long as I always have some glucose tablets in every pocket, draw, cupboard shelf, desk then that's taken care of it's just a matter of taking a few tablets.

This forum takes this openness of having diabetes to the world and what I like about this forum is, the fact that people who use it ARE interested in their wellbeing, their health, otherwise they wouldn't be on it. So from that point of view, we are all like minded people, all self managing a difficult situation. It's tough. Many of us have full lives to lead, bills to pay, families to raise; all on top of self managing diabetes. It really is down to yourself to manage diabetes, it's nice to have specialist nurses and consultants, and more importantly insulin which is "free" on the NHS, but essentially you need to look after yourself. I can only assume that such challenges make you a stronger person and probably focuses you and helps put life into perspective, making you appreciate the things many wouldn't give a second thought to, probably resulting in a fuller life.

Like many have said on this forum, you don't really have a choice but to "get on with it" and carry on regardless.....it's the essence of who you are that keeps you going even when faced with real difficulties.

 

[Amity Island]

Very confused, son 21 normal 21 year old rushed to hospital severely poorly and then to be given the diagnosis of T1. Information overload to say the least. Where do we even start? Day 1 home after 3 days in hospital and feel we have just been left to fend for ourselves. I know there will be lots of appointments for various things but it's all just so mind blowing for everyone in the family.

Hi Helen, another one for you from a post I did yesterday. Hope this helps too. It's basically saying the importance of getting the basal long acting dose right as a starting point.
As a fellow T1, for me, the most important thing about blood sugars behaving within target. e,g on your testing meter generally between 5 and 7 before a meal is getting your basal right. Your basal (long acting background) insulin is the datum to work your boluses from, to put it in builders terms, it's your foundation. If your basal is not right, it would be very difficult to work out your meal time short acting insulin doses and carb ratios. Ideally, the basal insulin should keep your blood sugar consistently steady all day and night at a similar level reading, provided you were at rest for that same time, (exercise would effect this during this period). This is what I did on my last basal check. Woke up, had my long acting basal insulin as I normally do in the morning, if morning blood glucose reading was ok ( between 6-8), then that day I missed my breakfast and also lunch if i'm not too hungry. The test can only be done if I wasn't doing any exercise as this would cause a drop in blood glucose reading, which is not what I want during a test period. So, from morning till before my evening meal, I'd check my blood glucose readings every 2hrs. If my basal insulin dose is right, then in theory, my readings should all be similar to what I had in the morning reading. I'd repeat the test a few more times on some other days to make sure everything is correct. Once basal insulin dose is good, then the meal time doses can be worked out from day to day, meal to meal. I generally use 1.5 units of insulin per 10g carb in morning, then always 1 unit of insulin to 10g of carb from lunch onwards. You can probably see on this forum, everyone's doses for both basal and bolus (meal time) insulins can vary from person to person and from season to season also.

That was a good link from everydayupsanddowns for the free online course. Also the DAFNE course is very good also, quite comprehensive, if you can get on it.

 

[Hells11]

Mothers! LOL

I was a healthy 22 yo and had been married for 15 months, living in the house my husband and I had bought, 20 odd miles away from my parents. My mother visited me on the second day I was in hospital and bugger me if the doctor wasn't explaining it all to her, rather than me! That did annoy me, even though I do understand that kids are always your kids however old they (and you! LOL) are - and to be fair my mom did say to him several times that she wouldn't be there to help me 99.9% of the time although 'of course I'm interested'. It wasn't until after that he started to speak to me as an adult really. So - please do take care not to get too involved ! Just be 'an interested listener' and support him from the sidelines where and when you can.

 

[Hells11]

I really appreciate your comments and I will take it all on board thank you x

 

[Hells11]

Struggling ....He is so in denial with it all but again as his mum(and I appreciate what you are saying trophywrench ) I been to keep him alive basically. His readings are between 19 and 27 and 27 being before he goes to bed. His first appt with the diabetes clinic isn't until th 11th Dec I know everything I have read 27 is high but I don't know what to do. He is so angry and so confused it's heart breaking

 

[Hells11]

He is taking his readings he is taking his insulin he looks so poorly so thin and so skeletal, eating what we think is ok but clearly not. His keytones at ok

 

[Sally71]

It will take a while to get his insulin doses adjusted correctly. With a readings in the 20s he really needs more insulin, but of course you need to speak to your medical team to find out how much and when to give it to him. Can you not talk to your DSN on the phone to ask her? When my daughter was first diagnosed we were in and out of hospital every week for the first month or so, just to check how things were going and to make any necessary adjustments. They also have phone numbers, email addresses, emergency pager number etc, so we should be able to get hold of someone almost any time we need to.

6 years in we are now managing things pretty well by ourselves (as well as you can anyway, diabetes likes to spring surprises on you and rarely does what you think it will for very long at once!), and hardly ever need them now apart from the 3-month check ups. But in the beginning I don't know how I'd have coped without regular contact with our medical team. Good luck 🙂

 

[Amity Island]

It's good practice to keep a daily diary of how much insulin is taken and times of day, you can learn a lot from doing this. It also helps in the early days to keep to the same food and portions until things are smoothed out. Can't say much more because that's what the doctors are there for.

 

[Bruce Stephens]

He is taking his readings he is taking his insulin he looks so poorly so thin and so skeletal, eating what we think is ok but clearly not. His keytones at ok

Once his levels are a bit closer to normal he'll start to feel and (eventually) look better. But it's a big shock, and deserves to be.

Depending on your local hospital, it may be that the dietician is actually part of the diabetes team.