Diabetes consultant has give 14 year old DS 8 weeks to get blood sugars down, or they'll take away his pump.

[Spidermama]

He's 14 and seems to be taking his eye off the ball completely as regards his diabetes. He does the bare minimum to get by with the pump. He's doing 2 or 3 tests a day instead of 6 - 8. His blood sugars have been running high for months now. (HbA1Cs over 10mmols for the last 6 months). He's supposed to do regular fasts and collect data but he's so busy socially and in terms of sports that it's extremely difficult to plan these fasts.

His team have told him they'll have to take the pump away if he's not using it properly because they can't justify giving him it when his blood sugars are no better (worse in fact) than they were on the much cheaper treatment of injection pens. So if he's not down in the 8s at our next appointment in 2 months, they're taking the pump.

It's a very hard subject to talk about with him. It's so raw and charged. He has to live with this mortal threat constantly and I think it really affects him.

DH storms around in a panic exasperated, his tone always pejorative. DS gets defensive and angry and liable to rebel even more or retreat from the subject and return to the state of denial. I try to talk to ds about it, gently nudge him into doing more tests but also listening to him. It has to be down to him ultimately after all. DH interprets this as my being too woolly and too trusting of him.

The problem with diabetes is that the complications (which are many and nasty) are in the longer term. He'd probably only start getting them in his 30s, and of course to him that's centuries away!

No-one can force him to do blood tests. How can I make him WANT to?
How can I instil the seriousness of the complications and help him guard against them?

spotty what pump did you go for? Exciting! :o

And def talk to someone like a mentor - I've had t1 for 30 years and had severe retinopathy, I've been a contact for another lady who was going through similar things a few years behind me. Our DSN put us in touch with each other.

I looked at self-funding a pump, but worked out the minimum cost would be £100/month, more like £250/month just for consumables, then £3k for a pump (£1k/year) plus CGM costs. Fortunately I've had mine for 10 years now and I'm not giving it back! It honestly has changed my life.

He doesn't want to lose his pump Paddy.
I see what you mean about cgm being costly.
There are so many products out there. I just hope the costs will come down.
I talked to one of the diabetic nurses this evening and she's going to refer ds to a paediatric counsellor or psychologist. It's long overdue really. The emotional and psychological impact is almost ignored.

I have a very bad case of pump envy [jealous] !

I keep telling my DN to get a pump while he's young enough because once you're an adult it seems as though your chances dwindle. Makes me mad because I've had T1 since I was in Y3 in primary school but pumps weren't around then :( We even had to pay for pen needles!!!!

Think Dexcom cost us around £800-900 for set up & then around £65 per sensor which for us lasts generally 10-14 days. Occasionally have fallen out after a day or 2 which is gutting when you know what they cost. Having said that I would hate to be without them.
What pump does your son have Spidermama - some of the sensor systems are integrated with pumps Medtronic with enlites & Animas Vibe with Dexcom.
You can do a trial of Dexcom with Advanced therapeutics where you pay the whole cost up front & the cost of 2 sensors & if you don't keep at that point they refund the main cost so just the cost of sensors.
Wasn't really shown how to use CGM but fairly straightforward & good video tutorials on web. We learnt a lot about interpreting levels at FFL conference from Gary Scheiner , a USA diabetes educator. ( Has an excellent book - Think Like A Pancreas.
Joe Solo is great - am hoping he will be at FFL conference again this year.

Rue in still on the list only saw my consultant last month not sure what the wait is.

Paddy my mum is diabetic too there's a lot of autoimmune in my family which is, apparently, hereditary.

Just a thought, when my son's hb went up it was also because we were running him too high in the night, would it be worth doing some night checking to see what his levels are doing over night, tweaking basal, then making sure that he is going into the night on a reasonable number - we have a no carbs after nine rule in our house to make sure that ds' numbers aren't stupid at bedtime! Then we can correct fairly confidently at about 11pm.

Top 10 Tips to Control Diabetes

1. It's not about your diabetes — It's about your life

Ask yourself:

What do I love to do?
What things about diabetes keep me from doing it?
What are some solutions?
How can making an action plan help?

1. It's not just about blood sugar

Heart disease and stroke are the big killers for people with diabetes. Here's how to lower your chances:

If you use tobacco, quit.
Keep your blood pressure at or below 129/79.
Consider taking a statin drug.
Ask your doctor about ACE-inhibitors.
Talk to your doctor about whether a daily aspirin is right for you.
Make healthy lifestyle choices.

1. Stress makes everything worse

Stress can get in the way of taking care of yourself and managing your diabetes.

Find out what's causing stress in your life.
Learn ways to reduce or cope with daily stressors.
Schedule something fun for yourself on a regular basis.

1. Exercise makes everything better

Exercise is good for everybody. It gives you more energy, reduces stress, helps you relax, and makes it easier to fall asleep.

Work towards doing at least 30 minutes every day.
Make it fun, not a chore.
Try a pedometer.

1. Don't diet — Make healthier food choices

Find a healthier way of eating that you can stick with for life.

Instead of thinking about food as either "good" or "bad," think about which foods support good health.
Eat a variety of foods to make sure you're getting the vitamins and minerals your body needs.
Talk to your dietitian to find a meal plan that works for you.

1. Be smart and use your "flashlight"

Your blood sugar monitor helps you see in the dark, like a flashlight. Test your blood sugar to get information you can use, for example:

When you first wake up in the morning.
Before or after meals.
Before, during, and after exercising.
Whenever you feel "odd."

1. Get regular checkups

Keeping regular appointments with your doctor and getting tests and screenings on time, helps you be an active partner with your health care team.

Know what questions to ask.
Write them down ahead of time.
Let your doctor know at the beginning of each visit what specific things you want to talk about.

1. Make sure you're not depressed

It's often hard for people to know when they're depressed. Here are some common signs:

Feeling down, blue, hopeless, sad, or irritable
Not enjoying activities that used to be enjoyable
Feeling as though you're letting other people down
Trouble concentrating
Tired all the time, no energy
No interest in food
Overeating
Trouble falling asleep
Feeling like life isn't worth living

1. Write down your care plan

Work with your doctor to design a diabetes care plan that's right for you. Be sure to include:

What drugs you're taking and why you're taking them.
Your daily targets for the numbers you can control.
The goals you want to achieve.
Who you should call and when.
10. Join a group
Groups work magic!

A problem shared is a problem solved.
You'll be amazed at how much you have to offer others.
Check out in-person and online Living Well With Chronic Conditions workshops.

manishshah1 That list may help for Type 2 Diabetes but isn't so helpful for people with Type 1

spidermama My ds is also 14, was diagnosed with Type 1 18 months ago and was given a pump 7 months ago. He had brilliant control on MDI but has had consistently high readings on the pump, and it's difficult to pin down why. Partly he doesn't prick test at school lunchtime, or guesstimates the bolus wrong, and partly because he's growing. We seem to be constantly adjusting the insulin.

Do you upload the pump readings regularly for your dsn team? Could he just be growing/hitting puberty?

I agree the psychological impact is ignored. Dh & I have somewhat stroppy arguments with people who think it's all easy 'jab-and-go' now.

OP, I've only scanned through the thread quickly as in a rush, but what pump does he have?

The reason I ask is that some cgm are compatible with some pumps. So for example, I have a medteonic pump (nhs funded) and medtronic cgm (self funded). The cgm doesn't have a second reciever-its the pump so I only have to wear one device.
I paid £600 for the transmitter and the sensors are £52 and although they are only licenced for 6 days, I can get 14 out of them.

I got my cgm to get through my last pregnancy and after being type 1 for nearly 25 years, it is yhe best thing I have ever done. I am looking forward to going back to work so I can afford to do it again!

They (the pct) are getting very strict about continued pump funding. I have had mine for nealry 5 years and it has made a difference for me. But I missed my last appt (complete accident) and I was sent a letter threatening pulling my funding. When I rang, the DSN apologised and said they are getting very strict on this and stopping funding.

I also think he needs to have an outlet to talk to someone. Is there a forum he would use? I have no idea if there is a forum aimed at teenagers-there should be! Or a blog? Maybe he could start one?

And, complications are a real concern. I also rebelled in my teens (and not even too bad-highest hba1c was 9!) and I have had retinopathy and maculopathy. I have been told its just down to bad luck and bad genes. But when I was told of this initially in my early 20s it was a real shock and honestly bought me to my senses. I have now had 2 wonderful babies, but the pregnancies with diabetes were tough. Really tough. Thankfully, he won't have this worry.

What is is hab1c btw? Is getting it down to 8 a possibility?

My sister has had diabetes since she was 12, she's 52 now. She was also sports mad, she did everything she possibly could to control her diabetes properly to stop it having z detrimental effect on her performance.she same for Scotland for several years so can't have been bad!

If he controls it, he rules.
If he doesn't control it, diabetes rules!

she swam for Scotland
And incidentally got a sports scholarship to an American uni.

Sorry, I realise I sound preachy, lol

I meant it as a motivational thing for him! If he realises it can effect his performance he'll be more careful.

Bettys I agree that most people have no idea what hard work diabetes is! Even my DH doesn't quite get the fact that highs and lows sometimes just happen!

I think there's a lot of psychological support for little kids with type 1 but not so much for teenagers and virtually none for adults.