bad experience with son at appointment (long sorry)

[mirror]

NOT SURE IF THIS SHOULD BE IN THE YOUTH SECTION?


We had missed an appointment due to holiday and then had to reschedule again due to work issue (did rearrange though - not just missed)
The doctor told us she he had lost 4kg, and he was 'obviously DKA' and they were going to check his ketones, and if he had any they were going to admit him - as we werent turning up to appointments and hadnt brought his meter or a diary....

- son is 13, well known by diabetic nurse and school as badly behaved generally, and challenging, including in relation to his diabetes. Changed this year from mixtard to basal bolus regime, because terrible control, never doing blood sugar, eating rubbish all the time and hba1c of 14 which apparently is highest the machine goes up to so it could have been anything. At this stage he was podgy round his tummy, and pre diabetes 3 years ago his natural physique like his dads is skinny skinny skinny.

His hba1c was down to 12 and when they checked his ketones he was not 'obviously DKA' - he was actually hypo at 1.7.

No congratulations from staff for a great improvement in hba1c at all.

Feel extremely annoyed at being treated like this and seems like doctor is treating us like a family who 'need watching' because they think we might be neglecting him - doctor told us that he is their 'worst' patient they have ever had

I want to put it in writing to the doctor and copy to our gp because the doctor always puts stuff in their records about concerns etc - and i feel that they have badly misjudged us, and also treated us badly in the appointment - what do you think?

oNE reason he might have lost weight could be because he is eating less carbs so he doesnt have to inject all the time - ie might have nuts, or cheesestring or less than 15g snack - which i can understand!

Doctor saying obviously needs to eat more carbs - (he eats baked beans when he gets home from school every day and has cereal or toast for brekky each morning, and has sausage and chips, roast spuds, pasta on a regular basis for meals - so i dont think he does!)

He looks better having lost the 4kg - and also the doctor said that he isnt having enough lantus and needs to up it - although going hypo - she has upped it from 40 units to 44 units and now he is under 2 at least 3 times a day! - can this be so she hopes he eats more?

After 2 days of this we told him to bring it back to 40 and he has (un believably for him) agreed to keep a proper diary for a week and we can take it from there - actually the bad experience at the hospital had brought him on side more with us - which is a good thing!

 

[Otenba]

Sounds like you're having a hard time from either side! I hope the agreed diary keeping is a success so you can get a better light on the whole situation.

Considering how he is, has your son been offered a DAFNE or KiCK-OFF course at all? A better understanding of their condition may be a great way of getting your son to help himself a lot more. I know I would have loved to have either of these courses available to me at his age.

KiCK-OFF (DAFNE for kids): http://www.kick-off.org.uk/
DAFNE: http://www.dafne.uk.com/

Best wishes with all this. Keep your chin up!

 

[mirror]

thank you
i have heard of dafne but not kick off - son not offered either - i think i will mention them to diabetic nurse - who is better than doctor - but 'toes the party line' !

 

[Jen&Khaleb]

You'd think your clinic would be well aware of how teenage children mistreat their diabetes. There is also the hormones to contend with making control extremely hard without the social issues. We have lovely DN's here who ride out the awful times the kids have with nothing but support. There only aim is for the kids to keep coming back to clinic so when they are ready to take control they can have all the assistance they need. The young adults I know all did terrible things with their blood sugar levels. They tell stories of injecting insulin into the couch, getting their non-diabetic friends to have levels done so the memory in the meter looks great, pressing the control solution button on the meter so it doesn't record a bad level. Sure, the hba1c doesn't lie but it isn't always the greatest way of seeing improvement either. Having a lot of hypos will reduce the hba1c even when there is not improvement in day to day levels.

Yes, I think you have been treated badly and I hope your son comes out of his teenage fog sooner rather than later. Having him back on your side might get you talking enough to find out how to get better levels that could also improve his behaviour a whole lot. I'd look at going somewhere else and having a fresh start if it were possible. I don't know if I'd write a letter or not. I'm fairly blunt with Khaleb's dn and with adults dealing with my non D 16 year old. I can say from 13-15 were very trying with my teenager but they do come out of that strange state they go into.

 

[jopar]

Was your son showing any signs of a hypo? or was the BG taken to prove a point that he was high?

Because if he's got a HbA1c of 12% and he's standing with no particular symptoms of being in a hypo at 1.7mmol/l there is serious problems with his control...

Theroritically (sp) a 12% HbA1c suggest that his blood glucose levels are running high and not going down into the lower normal ranges... And it be likely that his body would throw a phamtom hypo somewhere in the 4's and he probably going to become unconsious somewhere when the body hit the the top ranges of 2's...

So from what you are saying it very much that his BG's are hitting one end of the scale to the other very quickly indeed..

His mood swings in school could be that he's hypo and nobody's checking but assuming that because he's still standing he's fine and just being troublesome or a little git...

If this started to happen when he change from 2 jabs to MDI and the lantus.. It could be very well be caused by his lantus jab... which is know for several problems mood swings one of them, and the other is unpedictable flucuations in BG amongst them..

Personally I would increase his testing regime, ask the school to ensure that he tests his blood sugar's when his behaviour is unsocialable as he good be hypo!

And I would go back to clinic speak to the his DSN and ask if he can be changed to levimer for his background that doesn't have the assoicaited problems that seem to be linked to Lantus... As this would rule out whether this is a Lantus issue or not..

 

[mirror]

He was non-symptomatic and the purpose of the BM and ketone test was to admit to hospital. The fact that an appointment was missed (cancelled by us) due to a family holiday which was booked 8 months previously for 6 people does not matter as far as this endocrinologist is concerned. On speaking to the nurse and the son after the appointment, he is actively trying to eat a low carb diet instead of pushing carbs constantly. This probably means that he’s treating for hypo regularly and pushing up the HBa1c. The Lantus has not affected his moods – he’s always been moody but seems to be getting better at the moment – he’s generally happier in himself. He’s keeping the diary for a week and putting everything in it which is great as he can see the point of this.

 

[diabetesmum]

Our experience is that even hinting at 'low carbing' at clinic is a BIG mistake.

About a year ago they reduced our 16 yr old to tears suggesting she has an eating disorder (never mind that her BMI is 25!), and, like you, I got the impression that they were 'watching' us. Her HbA1c was down at that particular visit but no positive feedback for that, just a long lecture and accusation from the 5 assorted health professionals in the room with her. We had no idea she was going to be treated like this and had for the first time ever allowed her to go in on her own. Eventually we went to find her when she didn't emerge for ages and found her in a highly distressed state. I was incandescent with fury - how dare they?!

Anyway, we now avoid all mention of 'low carbing' and they have backed off a bit. Low carbing goes against 'the party line' that you mentioned, so you are up against it really! Our experience with clinic is that a 'need to know' basis works best.

All the best,
DM

 

[Loopy]

I know how you feel my daughter is 4 and has been type1 since she was 2 her test today was 7.5 (to me that's good) and she is on an insulin pump. I totally forgot about the clinic appointment and had a phone call to say I had missed it and could I go there straight away, which I did only when I got there I was totally abused by 2 nurses and the consultant. He said to me that he thinks I can't cope with my 3 kids, going college and working a pump. To me that was bang out of order my kids are well cared for. I will be making a formal complaint and my daughter will not be returning I go there for support not to listen to their abuse

Sorry for my rant but I think u can monitor diabetes and try to control it and no one is ever going to get it perfect all the time. I would love to see them control it.