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

(40 Posts)
Spidermama Sun 02-Mar-14 11:19:41

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?

LastingLight Sun 02-Mar-14 12:43:39

A friend of mine had the same problem with her son and asthma. When he was a bit younger than your ds he spent a week in hospital struggling to breath. The first day he was back at school he forgot to take his pump. She just couldn't get through to him. Eventually she took him to a psychologist whom he has seen before (dad issues), and she talked to him about it and got him so far to take responsibility.

Doyouthinktheysaurus Sun 02-Mar-14 13:20:36

It does sound like he needs some kind of psychological support to come to terms with having Diabetes. Or maybe the chance to speak with a fellow diabetes sufferer a bit older but still young enough that your DS doesn't immediately switch off iyswim.

I don't know much about diabetes management in young people but I'm worrying if there is a charity that can help you out. Have his team suggested any supportive measures?

I feel for you all, it must be so toughthanks

tribpot Sun 02-Mar-14 13:35:44

Yes - my suggestion was going to be much like Doyouthink's. My dnephew has dropped out of his first year at uni and a big part of the reason for that is the difficulty he found in managing his diabetes for the first time on his own. He'd been relatively good about it up until then. I suggested to my bro that he probably needed a 'diabetes buddy' - maybe in his case a final year or post-grad, someone old enough to feel like a mentor but young enough not to be some old git out to spoil all his fun.

Would it be the end of the world if the hospital did take away the pump? I appreciate the injections are unpleasant but perhaps he needs to see that there are two ways to manage his condition - play the game and get on, or fail to and have to make do.

BarbarianMum Sun 02-Mar-14 15:13:20

I think most young people with (potentially) serious medical conditions find the teen years difficult. My friend's son (life-threatening allergies) took terrible risks with his health b/w 14 and 17 although he calmed down thereafter.

I think some kind of counseling is a good idea - lifelong conditions are a huge thing to come to terms with.

paddyclampo Sun 02-Mar-14 16:41:35

I've had type 1 diabetes since I was a kid. My team won't give me an insulin pump because my control is too good, despite having some spectaculars hypos, so it seems we can't win!!!!

Having diabetes as a teenager was probably one of the toughest times for me. I did some really stupid things like not taking my insulin, refusing to test etc. But I'm now nearly 40 and apart from some minor damage in one eye I am pretty much complication free!

I had some big rows with my parents back then who were always on my case. I didn't know anyone else who had type 1 so my team found me a "diabetes buddy" which helped me loads. I also used to go to diabetes camp.

One of the things that was said to me which shocked me into taking more control was that if I didn't sort my diabetes out I ran the risk of not being able to have children - even as a teen that shook me to the core.

I definitely think talking to others would help. I still have days where I think diabetes is a complete pain, and wish it would give me a day off!

SpottyTeacakes Sun 02-Mar-14 16:46:47

I've been diabetic since I was a child too and was an awful teen. I drank often and skipped injections. Could go months without testing. I agree with others that someone to talk to could be key.

My parents never really looked out for me with my diabetes and left me to it, I think that's made it harder for me to take control now I'm older. Keep going he will get there smile

Paddy I've just had the go ahead for a pump, don't give up hope!

paddyclampo Sun 02-Mar-14 16:49:27

How on earth did you manage that Teacakes ?! smile

SpottyTeacakes Sun 02-Mar-14 16:53:00

Dka with readings <15 and extremely erratic readings despite me knowing what I'm doing (consultant reckons down to busy life grin) although hba1c of 7. He actually suggested it. Probably helps that he's diabetic too and I've known him years. I'm super excited!

paddyclampo Sun 02-Mar-14 17:01:02

I'm jealous!

Whereabouts in the country are you? They seem to be like gold dust round here! How long do you have to wait?

That's brilliant that he's diabetic too, nothing worse than people who preach about diabetes when they don't really now what it's like!

SpottyTeacakes Sun 02-Mar-14 17:39:45

I'm in West Sussex. I have to go on a course to learn to use the tester which goes with it then I have to go on an image course formerly called sailing. I'm hoping this year.

Op are you have to afford a cgm for him? I understand if not as I couldn't! Might be worth looking into though.

Bramblesinforrin Sun 02-Mar-14 20:21:59

Hi op, sorry to hear this. I have a fourteen year old so with t1. We pay for cgm (dexcom), which has helped us a great deal as we can see what is going on, he doesn't feel so 'visible' as it's reduced the need for testing. This is in with his pump (animas vibe), but is also available freestanding from a uk company (google it!).

He still need to do his tests at least twice a day, and I have had to threaten sanctions if he doesn't test and calibrate and if he doesn't respond to the alarms on it. Sigh!

Are you aware of the children with diabetes uk mailing list? I would strongly suggest that you sort yerself a gmail account and sign up with them. There ae many other parents in the same situation who should support you.

It would also be worth watching this video - Joe Solo is a great guy!

www.childrenwithdiabetes.com/video/JoeS2.htm

Bramblesinforrin Sun 02-Mar-14 20:24:17

www.childrenwithdiabetesuk.org/children-with-diabetes-email-and-mailing-lists/mailing-list-england/. Mailing list details.

kpandthesunshineband2 Sun 02-Mar-14 20:55:08

I would also second heading to CWD email list & associated facebook group. There are quite a few on it with teens that may be able to give you ideas.
My son is 11y so still fairly compliant although can see a time coming we will have similar problems.
We have a CGM also ( self-funded but hoping for funding soon) & that does help lessen the amount of testing , although I still insist on BG test before meals. Hospital take on it doesnt sound altogether supportive, presume they are trying to shock him into better care but could be counterproductive! Have they offered other support?
Also would really recommend a weekend conference called Friends For Life, which is organised by the american part of CWD. Lots of talks for parents & children , including teens & think just being in an environment with other T1 teens really helps. The next one is in August in Windsor - think there will be a link on CWD site although there may be a waiting list for places at the moment but would highly recommend it.

kpandthesunshineband2 Sun 02-Mar-14 20:59:02

Link for conference below - says currently closed but think they will be aiming for more sponsorship & then will open it up for more bookings.
http://www.childrenwithdiabetes.com/activities/UK2014/

kpandthesunshineband2 Sun 02-Mar-14 21:00:25

Also recommend the Joe Solo talk.

Bramblesinforrin Sun 02-Mar-14 21:18:24

Would recommend the conference. We learned a lot, got some great support from others in the same position and our boy became part of a group of children who 'get it'.

Joe Solo's take on it is that testing is non negotiable. I'm sure there's more of his work out there - he has a very laid back, approachable manner and also has diabetes himself.

Spidermama Mon 03-Mar-14 16:40:14

Great film Brambles. Thanks so much for sharing. I've sent a link to DH (who's away). I love Joe Solo's approach but I don't think I coujld bring myself to punish ds for poor readings/control.

KPandthesunshineBand I agree I don't think the hospital are being too supportive about this but then again ds has been SO bad about testing recently I don't feel I can demand supportiveness. (They've been pretty supportive up until now. It's just that we seem to have reached crunch point')

How do you go about getting hold of CGM? How much it is? I met a woman the other day who's teenager is under the care of UCLH and she's giv en 10 CGMs a year which last about a week each. She recommended my moving ds's care to UCLH saying it was a real eye opener for her. Again I don't feel I can dump my current team and demand better until DS does the very basics.

I will, however, ask them again for some psychological help because I really think he'd benefit from that.

Thanks so much for all your help on this thread. I'm off to look for that CWD conference now.

paddyclampo Mon 03-Mar-14 18:55:43

I was going to ask the same about the CGM but didn't want to hijack Spidermama's thread!

OxyMoron Mon 03-Mar-14 19:01:10

I would seriously think about the UCLH option. They are the gold standard and have specialist adolescent clinics and excellent psychology support. We moved there, but my dd is only 5 so no teenage T1 experience as yet.

Bramblesinforrin Mon 03-Mar-14 19:32:29

I know what you mean about the punishment thing spider mama. I find that hard and tbh, it's just firm threats and gets him into action!

There's a company called advanced therapeutics that deals with dexcom cgm. Each sensor is supposed to last a week, but in our experience we can get them to go for two to three, especially when we use some special tape to hold them on! It's not cheap, but we've saved up Dla money to pay for it - wouldn't be without it.

Spidermama Mon 03-Mar-14 19:43:00

Hijack away Paddy!
Thanks Bramble. I'll look into the cgms and Oxy I will keep an open mind about UCLH. It's just really hard when you've been with the team since diagnosis so he's grown up with them and they know him so well. Maybe that's just sentimentality.

SpottyTeacakes Mon 03-Mar-14 20:16:31

You definitely grow attached to staff like that. I could have cried when my lovely diabetes nurse got poached by those weasels at Portsmouth angry

Found this:

"Initial cost - for the hardware such as the receiver and transmitter - varies from around £1,000 to £2,500.

If you have a newer Medtronic pump you may find CGMS is already integrated or may be available if you pay a supplement (around £200).

Running costs

The main ongoing cost is the disposable sensors, costing around £40 - £60 per sensor, with each sensor lasting a recommended 5 - 7 days. Many users find they can wear their sensors for longer than the recommended number of days."

paddyclampo Mon 03-Mar-14 21:29:39

I still miss the team I was under at Alder Hey as a kid! Everything was so much better when I was there!

Has anyone paid for a pump? If you do buy your own CGM does somebody show you how to use it?!

How does your DS feel about losing the pump Spidermama? My nephew is type 1 (must be something dodgy in our genes) but he is refusing to go on the pump :S

Bramblesinforrin Mon 03-Mar-14 21:39:24

http://www.dexcom.com/en-gb

Ossom!! Don't forget what I said about getting 2 weeks plus on average from each sensor.

Also. Do check if you could get one that would sync with his pump. We use emla cream to overcome any discomfort with insertion,

Fwiw, the prof at uclh is fabulous. I've met him. He is soft spoken, so knowledgeable and the kids adore him. He writes lovely letters to them and is totally 'onside' with them.

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