New Diagnosis

[Wendy65]

Hello my name is Wendy and this week my 19 year old son was diagnosed with Type 1 diabetes.
This has taken the wind from my sales and turned my world upside down. I know this sounds extremely selfish and it’s about him and how he is, but I’m finding it so hard.
I don’t know much about this, but have joined her and subscribed too. He’s usually quite open with me and talks to me, but seems to be shutting me out on this.
I feel very isolated and lonely, trying to keep a brave face on for everyone and keep going.
Can anyone offer me any advice please.
Thank you in advance.

 

[sb87]

Hi Wendy
Im new here too but wanted to say that I dont think it is selfish of you feeling this way at all. We care a huge amount about our kids, no matter what their age so its natural that this has rocked you too as its something that you cant make better and as a parent that is hard.
Have you and your son been given support from wherever he was diagnosed? hospital or GP?
Maybe he is shutting you out as its been a big thing for him to get his head around too and maybe he doesnt know how to approach it with you as he doesnt really understand his feelings himself. Hopefully he is able to be more open with you soon and you can commence this journey together and learn together.
Im sure many people on here will be here to offer advice and support soon too. Ive spent the afternoon browsing the forums and it seems there is a great of compassion, support and knowledge on this site.

 

[SB2015]

Hi Wendy

I am sorry to hear of your son’s diagnosis and it is great that you want to find out as much as you can. It is quite common for people to be fairly private about their results, but it must be difficult as this is such a change from the relationship you have with your son.

This is a good place to ask absolutely any questions that arise. You might want to look at a very good book Type 1 Diabetes in Children, adolescents and young adults. I was diagnosed with T1 at the age of 53 and still found this book very good at explaining what was going on. Having said that, remember that no questions are considered silly on here. Just ask.

 

[Leadinglights]

Welcome to the forum, it is a shock when a diagnosis hits and will be very overwhelming for both of you but the more support you can get from his diabetic team in the early days the easier it will be. Many parents find approaching their offspring difficult if they don't want to engage with them about any problems. It is that age when they are no longer a child but don't have the maturity to handle something so big.
There are a few young people here and also parents of youngsters so don't hesitate to ask any questions you have and I'm sure there will be many. Don't forget there are many different ways people manage the condition in terms of insulin regimes and technology they have available to them.
The Learning Zone will give you lots of information about the condition and the helpline is available for advice.
Perhaps you would like to say how your son came to be diagnosed and what insulins he is taking.

 

[Inka]

Welcome @Wendy65 Sorry to hear about your son’s diagnosis. You say he’s shutting you out, but perhaps he’s just finding it hard to process himself? It took me months to begin to feel better about Type 1. It’s a big lifestyle change, and I remember being upset and angry.

My advice is to be led by your son. If he says he’s fed up, acknowledge that rather than trying to cheer him up, if you see what I mean. Avoid attributing mood swings to blood sugar. That used to really annoy me - being told to test my blood sugar when I was annoyed for a valid reason.

See if he can get the Libre if he doesn’t have it already. Keep a stock of hypo treatments for him to draw on - glucose tablets, jelly babies, the little 150ml cans of regular (sugar) Coke, along with longer-acting carbs like digestive biscuits. Get him/you some digital scales ready to weigh foods in order to calculate carbs.

See if he’ll join the forum. There are lots of Type 1s here and a real mix of people. He’s not alone. The early weeks are hard but it does get easier. Please tell him that (and take it on board yourself)

 

[IrvineHimself]

As @Inka says it really is a lot to get your head around. I was only diagnosed with Type 2 a month ago, and I still haven't even begun to fully process the implications.

I going to tell you the following not because I am trying to be nasty or scare you, but rather to give you a possible insight into what your son is going through. Consider carefully before reading further

Like most people, I knew very little about diabetes and never really gave it much thought. Now, as I adjust, I keep finding out new aspects to my condition which are very alarming. For example my Doc will tell me something, I will nod in agreement and then, hours or days later, it will suddenly click and the alarm bells will start ringing. I will then do a bit of research, (here is a good source, as is Wikipedia,), get depressed and start to think: "Oh God! Not that, please let me die quickly!"

Then, I realise how much worse it could have been: For my age and chosen lifestyle I am fairly healthy, and the Docs are saying that they have caught it early enough that: If I follow the diet, exercise a bit more and take my meds then I will most likely remain active with a normal life expectancy. It is the "remaining active" part that concerns me. Given some of the potential complications which I personally have been diagnosed at being at risk of, dying quickly still seems a preferable option.

So, I strongly suggest that

• You give your son the space to allow him to work things through himself
• Let him know you are there for him when he is ready
• When he is ready suggest that he joins this forum. We really are a mixed bunch covering the full generational spectrum

 

[Wendy65]

Hello
Many thanks for all the support and advice, so much appreciated.
A little background, I’d noticed he wasn’t himself, weight loss, drinking lots of water, tired, going to toilet lots? So managed to get him to go to docs ( not easy) he left a sample, they soon called him back to the surgery and sent him straight to A & E, where he ended up on numerous drips and a 60 hour stay. In that time getting a diagnosis and meds to take home ( I’ll find out exactly what and put up again) but 3 times a day and another before bed.
He says he going back to work on Monday ( he’s a trainer maintenance engineer in Cadbury’s ‍♀️)
He has a clinic appointment on Thursday, then already had a three night break booked in Isle of Man with a friend, this I must admit I’m very worried about, but he’s 19 and I can’t control what he does or where he goes only be there. This isn’t easy, saying very little, doing nothing.
I have an elder son of 26, who has ADHD & Aspergers, so been very involved with this over the years, he lives and works independently, so I will get there with this new situation. Just going to take a while.
He’s been told when and how to take his insulin and this week eat what he wants. This is hard, as he’s eating things I’m really not sure about like last night chocolate digests. Sorry to witter on, but just all new.
Again many thanks for your kind words and help. X

 

[Inka]

You’re not wittering at all @Wendy65 🙂 It sounds like he’s been put on a normal Type 1 injection routine with a long-lasting insulin once a day to give him control of his background blood sugars, and 3 fast-acting insulin injections to deal with his food.

When he has his clinic appointment, I’d encourage him to ask for advice about his trip away. Phrase it carefully - ie make it a positive thing that will help him enjoy his trip. Also make sure his friend knows about the diabetes. Make sure your son understands about how alcohol could affect him with Type 1, if he plans to drink. Make sure he takes extra of everything - extra insulin, testing strips, hypo treatments, snacks, etc.

People with Type 1 can eat a pretty normal diet 🙂 I ate a chocolate hobnob this morning. The ‘only’ thing we have to do is think extra and work out the correct amount of insulin to take. It’s a big nuisance, but it does become a lot easier. Encourage your son to push for help with carb counting and adjusting his mealtime insulin. He’ll feel more normal doing that.

 

[Proud to be erratic]

Being on insulin AND if he is carb counting then he really can eat what he wants - providing he is taking insulin to match the counted carbs

But, this will be difficult in practice. As a maintenance engineer it could be that he has a strong numerical grounding, so the actual counting of carbohydrates won't necessarily phase him: and the hospital would (should) have given him an insulin to carb ratio to get him started. This ratio will almost certainly need refining, by trial and error; but its a sensible start point. However, along with counting carbs and applying ratios for dosing there are other numerical 'adjustments' that need to be made, which are as much subjective as they are specifically quantitative; the most significant of those is for exercise or physical activity (and to a lesser extent mental activity).

All of this is complicated and confusing at first, but over time it gets easier and matching how one feels with what one needs makes more sense. Unfortunately Diabetes can also be contradictory, no sooner does one think they have got something 'sussed' then another Blood Glucose (BG) factor kicks in and undermines one's confidence in what has been done. There are a lot of factors. This underminig is normal - but can be pretty demoralising.

If he is not carb counting yet (highly likely in reality) then matching food eaten to insulin taken is a guessing game!

Whatever, the big (huge) issue is knowing there is a reasonable risk of going hypoglycaemic, then of recognising when that starts and then treating that with appropriate high sugar content food in modest quantities. The hospital will have given him advice about this; whether he took the advice on board is a different matter. The confidence (arrogance?) of teenagers can apply. His first strong or deep hypo will shake him! He must, at all times and in all places - inddors and outdoors - carry a hypo response pack of goodies, such as dextrose tablets, Jelly Babies or sugar rich (non diet) drinks such as Coke or fruit juice. Hypos can arrive very quickly and without much warning, without Libre.

If he drives he must notify the DVLA, which is usually a formality - but a legality that could invalidate any insurance.

 

[everydayupsanddowns]

It’s quite normal to be profoundly affected by a diabetes diagnosis in the family, and I know my mum was quite shaken when I was diagnosed in my 20s. It’s not a condition that only affects the person diagnosed, and whether your child is 9 or 90 it is completely valid for you to worry - it’s what parents do!

If you (or he) would like some solid background information about T1 and modern management techniques there are 2 books which are often recommended by members here

Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - which is suitable for T1s of all ages!

and

Think Like a Pancreas by Gary Scheiner - A practical guide to managing diabetes with insulin

And do keep asking questions here - nothing will be regarded as too obvious or ‘silly’, and a diagnosis with T1 in the family is a very steep learning curve - it can really help to have some ‘old hands’ to bounce ideas off.

 

[Deleted member 34756]

Hi @Wendy65, thank you for sharing a bit of your story when a family member has been diagnosed with diabetes it can be a bit of a shock but were all here to support you. We do have a helpline team available at diabetes UK and they'll be more than happy to have a chat about and concerns you may have.

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[Wendy65]

Hi thank you so much for all your help and support. Someone did ask what has he been subscribed, I’ve attached his medication, although the doses have been increased now to 10 three times a day and 14 before bed.
I am meeting with his Diabetes nurse, my husband and son on Thursday, I do have some questions, but is there any advice on what to ask or know about that I’m potentially not thought about?

 

[Inka]

Ask about carb-counting; ask about Sick Day Rules (if he doesn’t have them already); ask what his target blood sugars are (they’re probably bringing his blood sugar down gradually rather than a big sudden drop); ask for a ketone meter if he doesn’t already have one.

You could also ask advice about exercise, and about his trip away.

 

[Wendy65]

Thanks for questions, very helpful. Just doing my list for tomorrows meeting.

Ask about carb-counting; ask about Sick Day Rules (if he doesn’t have them already); ask what his target blood sugars are (they’re probably bringing his blood sugar down gradually rather than a big sudden drop); ask for a ketone meter if he doesn’t already have one.

You could also ask advice about exercise, and about his trip away.