DCs diagnosed with diabetes - how is everyone getting on?

[mears]

Just thought I would update that DS seems to be coping really well with his diabetes which was diagnosed in February.

I am amazed at how laid back the diabetic liaison nurses are which obviously has helped him.

He has had a few hypos but nothing major - he manages them very well.

The nurses have said he doesn't need to test every day but to make sure he tests any time he feels unwell. Sometimes he goes 3 days which I think is a bit much but he will do a test if I ask him. Usually it is in the normal range which makes him really smug.

I almost forget at times that he has diabetes.

Thanks

Is no-one about?

hi mears, glad he and you are getting to grips with it! I must admit to being very surprised the nurses are suggesting he doesn't need to test every day. I test at least 4 times a day and don't think I could maintain decent control if I didn't. After all the dose for each meal is effectively a guesstimate - maybe he's much better than me at guessing! Is he still in honeymoon at moment?

Maybe he could be encouraged to at least test 1st thing in morning and last thing at night, these are the tests for me that are easiest to remember (meter by the bed!). This at least would highlight any major problems in control, also Hypos at night have always been one of my fears!

Sounds like you're both doing a great job coming to terms with it all.

Well done Mears! The fact that you almost forget he has diabetes means you're getting it right.

I'm also suprized at what they said about testing. I test about 10 times a day (ok that's quite extreme) but i would be all over the place.

But i'm on basal bolus so need to know my levels to know how much to inject.

After 20 years of diabetes i kind of forget i have it and that shots, finger pokes etc aren't normal!

Glad you're both doing so well

oh and mears, if it will help to have extra meters dotted around the place to make it easier, then you should have absolutely no problem getting extra ones from the nurses or even phone the meter company direct.
Because they make their money out of the strips they are generally pretty happy to give out their meters to type 1s on request (within reason!) on the basis that you'll then need their strips.

Hi Mears,

I was just thinking about you and your ds the other day when I found your old thread in my watchlist!

I'm glad you and he are coping so well, but am also surprised how infrequently he is testing. T2's who are not on insulin can get away with not testing very often but T1's should be testing daily. I know other parents of teenagers who are worried that twice daily testing is not enough. My ds is on an insulin pump and tests 9 or 10 times a day. The nurse who gave your ds this advice does know he's T1 doesn't she?

I "see" some of the other mumsnet families who were diagnosed about the same time as your ds on the children with diabetes email list I mentioned to you before and will point them in the direction of this thread.

Hi Mears

You and your son sound like you're doing really well. Good on him - it must be really hard for a teenager to adjust to such a big change.

My DS (dx Jan) is, touch wood, getting along fine. I've got to agree with everyone else re the testing ... we test 5/6 times a day and although I'd love to cut back to save his little fingers, we just couldn't. He has little to no hypo awareness (probably mostly due to his age) but I would worry, even if he were older, that he wouldn't realise he was hypo/hyper and that we might be missing highs/lows etc.

Keep up the good work!

Glad to get some replies

I popped into the Day Centre and spoke to one of the diabetic liaison sisters last week when I was at the hospital for a seminar related to my job.

She said not to worry about his lack of testing - they are grateful for anything they get!

She said that they had a teenage boy who was a triathelete who would perhaps be intending to test himself but wgen his mum said 'have you done a test' he would refuse to do it because he had been prompted.

I think their plan is to give him total ownership. They did insist he tests if he feels unwell at all and he does test if he feels hypo or more tired than usual.

In the main his sugars have been within normal range. He has injected the same amounts of insulin for weeks now. He does up it if he has something like pizza and so far his guesstimated have been OK. If we have been out for a meal i do ask him to check and see if he has got it right.

The fact he is 16 years old though makes a difference.

We go back to the main clinic in July.

hi mears, I can understand that they are very keen to not push him to rebel to the regime - of course that could be a slippery slope to not taking the insulin either.

It sounds to my inexpert ears that he may still be in the honeymoon period. (ie is still producing some of his own insulin) so accurate dosage is less critical as his body is still to some degree able to make up any shortfall. I have heard that the older you are at diagnosis the longer the honeymoon can last, and the best way to prolong it is to do enough to keep sugars in normal range so it sounds like he's doing great! Hopefully the nurses have already explained all this!

It must be very hard as a mother to restrain yourself from trying to help him deal with it all too much, but I can understand the nurses approach that he is old enough to get to grips with it in his own way.

Wishing you both lots of luck!

Hi Mears,

I'm really pleased you and your ds are having a relatively smooth ride. Well done.

I have to add to the surprise though about testing because with the best will in the world and with the strictest adhereance to diet and insulin regimes my ds's blood sugars are erratic at best. We test several times a day and would never dream of going a full day without testing. I find we are constantly tweaking his snacks or insulin depending on his readings so the tests are a lifeline. I've never met another T1 diabetic who doesn't test several times a day so am very interested in your case.

Do you mind my asking what insulin regime he's on? I can't remember. Chances are he must still be in 'honeymoon' which can last for a year or more, but I'm truly amazed that your team is unconcerned by the lack of testing.

It's fantastic that he's been in the normal range every time he has been tested. My ds is, if I'm honest, rarely within normal range. I'm in the process of trying to change his insulin regime but meeting with some mild but significant opposition from his team. We're moving a half step towards basal bolus but keeping with the Novomix in the mornings because he doesn't want to inject at school.

Hi Spider

His regime is Novorapid during the day, 4 units breakfast, 6 units lunch, 8 units dinner time. He has 12 units of levemir at 10pm 'ish. That could be at 6pm if he wanted but he has kept it at night.

He really has been on this regime now since April. He adjusts the 6pm dose if need be by 2 units up or down depending if he is having a treat or not.

I think it is most likely that he still is in a honeymoon period. He actually has tested been testing twice daily - results range from 4.8 - 7.7.

He is very comfortable now about injecting and has even done it at the table in Pizza Hut. I am amazed by him.

Hi Mears,

Those are great blood sugar readings, and, as you say, suggest that your son is still in honeymoon. I'm guessing too that at 16 he has gone through the worst of puberty which can also affect sugar levels. I read recently that some teenage boys have very good control for long periods - fingers crossed your ds is one of them.

It's great that he is in the habit of testing regularly and has no problem with injecting anywhere. We met up in a local cafe with some other friends whose children also have diabetes and had three of them in a row finger pricking and injecting before lunch - which provoked some very funny looks from other diners . I'm firmly of the view that diabetes came into our lives as an uninvited guest so should fit in with us rather than us fitting in with it all the time and its certainly not something which should be hidden away.

Are you carb counting? I'm just interested because I noticed your ds is having his lowest insulin dose with breakfast. My ds needs double the amount of insulin with breakfast than he would for the equivalent meal at any other time of day . You might want to occasionally test 2 hours after a meal to make sure that the previous meal dose was OK.

Tangerine - hi. No he is not carb counting. He either has weetabix or readybrek for breakfast - a real creature of habit. The diabetic nurses are happy for him only to do extra testing if he feels unwell or hypos. If he eats something he is not sure about he tests 2 hours later. It was mentioned when he was diagnosed that there are workshops for carb counting etc but I think they are just going softly, softly at the moment.

meant to say in my previous post that he had been testing twice daily over the past 3 days of his own accord.

When he had been reviewed at the clinic in May they were happy for him to test at breakfast and dinner time one day, then lunch time and pre bed the next day. That meant over 2 days you had readings for all meal times and bedtime. He then asked if he could reduce to daily and they said 'have a day off if you want', which he has extended to longer . I do prompt him but try not to nag.

Mears this thread has been preying on my mind so I hope you don't mind me coming back again and please feel free to ignore me if you like BUT I'm surprised that your clinic said 'not to worry about testing and to be grateful for what you get'.

Whilst I can understand this with Type 2 diabetes, I think it's very strange advice for T1.

Not at all Spider. The diabetic liaison nurse I spoke to was just being honest about how much people test in real-life. I think she was just trying to reassure me that he is more likely to take some control if I don't nag him but let him be responsible for his own management. He has decided to test twice daily over the past 3 days and is cutting back again because his results are so good.

I know as a midwife I meet diabetic women whose control and diet is absolutely shocking, so I know where she is coming from.

He is attending the young persons clinic every 3 months and is due to go back in April. The nurses, dietician and medical staff have been really great with him and very relaxed.

He always checks if he feels hypo which hasn't been a regular occurrence. He also tests if he feels extra tired. I am sure the fact he is 16 has a lot to do with it as well.