Teenager - High Bg 20+ Ketones 0 - 0.2

[Pumpkinmulberry]

We are carers of a 16 year old with T1 Diabetes other health needs and moderate learning difficulties.

He came to live with us in June, and it has been a steep learning curve for us.......We were told he had a good understanding of his condition, and was very independent at managing his carbs and injections.... We have had to take over the counting of carbs as the calculations were just too tricky for him, and we closely monitor his Libra device etc.

He tells all the professionals what they want to hear, then does as he likes.......Turns out he vapes, smokes, and drinks if he has the opportunity. Saves up snacks to eat in the middle of the night, and chooses full sugar drinks whenever he can. I am very anxious about his future health, but he thinks he is invincible, despite the fact that he already has kidney damage.

His Libra readings are usually within range when he is at home, but once out of the house, we watch the graph rise. His readings have been above 20 for a few days now. Night and day. (Finger prick tests usually below 15). We have let the hospital know, but no reply as yet. Ketone readings are 0 - 0.2.

Can the Ketones still be low even when the blood glucose readings are so high? Is he manipulating the readings? Why? We suspect he is under dosing. Can we input the Libra readings manually into the Accu-Check? Sorry to rant, but I am soooooooo worried!

 

[Lily123]

Welcome to the forum!

The readings from a finger prick are going to be more accurate than the Libre - ketones of 0.2 are relatively low and you wouldn’t need to really worry unless they get up to 0.6 and above - the one thing you can do to make sure the numbers from a finger prick are accurate is make sure he washes his hands before a finger prick

 

[Inka]

Welcome @Pumpkinmulberry 🙂 That must be really hard for you in so many ways. I notice you said this:

He tells all the professionals what they want to hear, then does as he likes.......Turns out he vapes, smokes, and drinks if he has the opportunity. Saves up snacks to eat in the middle of the night, and chooses full sugar drinks whenever he can. I am very anxious about his future health, but he thinks he is invincible, despite the fact that he already has kidney damage.

Has he been with you long enough that you’ve been able to have a chat about his diabetes? Well, a listen more than a chat really - asking gentle questions and letting him talk without much comments from you. Not many teens want to be told anything at all, but questioning can lead them to the answers themselves over time.

I’d ask him why he tells the professionals what they want to hear. In the end, it’s no skin off their noses as it will be him living with any damage. Does he truly understand that? Does he lie to avoid criticism and ‘interference’? Does he lie to get the appointment over with quickly? Does he lie because he’s afraid?

It sounds like he does what he’s supposed to while at home, then let’s rip when away from you. His high sugars could be due to excess snacks when out, or perhaps he’s eating ok but is self-conscious about injecting in front of his friends so doesn’t.

Getting him to open up to you so he feels you’re ‘on his side’ would be good. For that reason, you’ll probably have to let some ‘little’ things go, and concentrate on the big things. As far as complications go, perhaps talking about the possible future effects of damage to tiny blood vessel on his relationships would hit him more than kidney problems.

It’s hard to judge how to approach this and you’re treading a difficult line. You’re right to get the support of his team. You could ask if they have anyone he could talk to for support.

 

[EmmaL76]

I don’t have any advice as I havnt been in your situation. Just to say you sound like amazing people, you can only do your best and that’s never not good enough. If it helps at all I have heard similar stories, where the teen knows best and goes their own way. Sincerely wish you the best of luck

 

[Thebearcametoo]

Would he increase his basal? If he’s consistently reading high then an increase by 10% of his basal and see how he does with that for a few days then it can go up another 10% if needed. It obviously don’t solve everything but will help.

 

[Pumpkinmulberry]

Hi All, Thank you for the welcome, and for listening

The Diabetes team increased his basal to 19 at his last appointment. College are trying to buddy him up with other students for peer support, and we are trying to be less anxious, as we know it is normal 'teenage behaviour'.( I am constantly prompting about hand washing and using the Diawipes ). I just worry we are missing something, or doing something wrong.

I liked the comment about small blood vessels.....The Consultant has spoken to him in graphic detail about kidneys and feet and eyesight, but as the problems may happen in the future, and he seems to think he is invincible, it has no meaning now. However, Relationships are very much on his mind at the moment! ( The prospect of not being allowed to learn to drive did work briefly.)

I definitely think the 'lies' are a strategy to keep the professionals at bay, or to mask his learning difficulties. We will continue with the prompting.

Coincidently, just after I posted my question on here, he was dropped off by a relative after a contact visit. We thought he has been drinking, but it was a massive hypo. Went from 20+ to 2.6 in less than half an hour. It must have been happening in the car, but relative just drove off!

 

[Nick Young]

Hi

It sounds like you are doing an incredible job, well done. I am T1 and we also have a son, who was diagnosed at 8 and is now 20, who has type 1, so have been through some of the challenges you are facing. It looks like you are doing lots of the right things. Here's some of our experience

It is easy to say don't worry about it but much harder to do - I think that is only natural. For us in the teen age years listening and encouraging where key and holding back when you wanted to jump in. But part of that was letting go at home and allowing our son to eat the food he wanted to and when he wanted - it was a bit of a contract that if we did that carbs were counted etc etc. This reduced the feasting when away from us but also we all learnt that actually the food could be eaten if it was managed well and although the BG were not always perfect it was much better. The HbA1c results improved and were generally good. This gave us all confidence and the whole conversation around the diabetes become more open and relaxed. This has really helped over the last few years as alcohol in take has gone up - at the early stages of this we did some drinking at home together (that helped get the the conversation going!) to help us all understand what the impact was during and after....that has helped now and also helped open up the diabetes conversation for us all.

Good luck

The other thing that helped was telling his friends about it - they were genuinely interested and from what we saw wanted to understand a bit more about it and be able to help. We see these friends jump in now if they see the symptoms of sugar level dropping or there is a bit of friendly banter if high sugar food is being eaten - we we think helps ensure the carbs are counted and insulin given etc. It also helps when he is drinking and out with his friends and gives us some comfort that his mates will keep an eye on him. I also think it helped take the stigma away.

 

[trophywench]

Re the relative driving off - do you actually know absolutely that the relative a) knew about it or b) knew how to deal with a hypo?

I mean most of my friends and relatives knew I had T1 D but other than that and the fact I used my BG meter and had jabs before meals, 99.9% of them wouldn't have had a scooby what to do had I been severely hypo, other than ring 999. And from how you have described it, he hadn't lost consciousness.

So, anyway - once you've sucessfully treated any and every hypo - THE most important thing is to analyse WHY it happened. Only by understanding the whys, can we make a strategy to successfully avoid them.

 

[SB2015]

Welcome to the forum @Pumpkinmulberry

I have only dealt with teenagers as a teacher, so a very different situation, but those who were experiencing difficulties were very fortunate to have parents/careers such as you. Keep in touch and fire away with any questions that you have, and we will help as best we can.

 

[Pumpkinmulberry]

Thanks Nick, we would be inclined to work on the drinking alcohol at home in a 'safe' place. Unfortunately, the Social Worker was adamant about no alcohol at home. (She is quite happy for him to vape and smoke though ).

The youth club are going to do a project on Diabetes, as a way of engaging his friends, and hopefully encourage them to look out for him.

TW - I hope the relative was unaware of the situation. (They have just completed refresher Diabetes training, so our young man can visit them, and he hopes to live with them in the future). Unfortunately, they send him back with snacks and pop, (Not sugar free), vape, tobacco etc which he hides in his room. .......we are trying to work with the family, but they seem to see us as the enemy ☹️ We could not get to the bottom of what happened this time, but we will keep trying.