Hi Sharron
You have my sympathy. I am in a similar position, though fortunately for me not quite so bad as my boy has never yet had ketoacidosis, though goodness knows why not. My son was diagnosed 20 months ago just days before his 16th birthday. He went along with things fine for the first 6 months and his HbA1c fell to 6.1 from a starting point of 15.8. I thought we had cracked it. It seemed pretty straightforward. Then gradually things went downhill. First of all he started skipping injections due to exams, then stopped testing, then as his excuses seemed to be accepted by his team, he skipped more and more injections and testing almost completely ceased.
By Christmas things were getting really dire, his HbA1c was over 12, and his team did try various different approaches. They changed his insulin from rapid acting to mixed insulin to help him over his reluctance to inject at school, but still he 'forgot' to inject in the evenings, and testing really has been almost non-existent for months now. Since then his HbA1c continues to hover in the 11-12.5 range, where as it was 6.1 last summer.
I'm afraid I have no answers for you, I can only empathise. My son still 'forgets' his Lantus most bedtimes, his Novorapid most evenings and only seems to 'remember' his M3 in the mornings. It isn't unusual for him to go a full 48 hours with no insulin on board whatsoever, but for some bizarre reason it really doesn't seem to affect him. Well not so that I can see anyway.
Does your daughter attend a child or adult clinic? I only ask because my son changed to the transition/adult team this last week and he has come out of it much more positively. He said how nice it was to be talked to as an adult (and he wouldn't normally talk so readily about what had gone on in there) and feels he has a new DSN he can relate to so much better. She was nearer his age and she has taken his mobile number and is going to be in contact with him regularly by the sound of it.
What sort of relationship do you have with your daughters team? Are they easily accessible? Does your daughter talk to you at all about her diabetes? My son wouldn't talk at all the past few months. Any time I mentioned anything to do with his diabetes he would go off on one at me. No-one else in the family would try talking to him. I am just now starting to see glimmers of hope that maybe he is starting to take tiny steps to coming out the other side of it (fingers crossed).
It is so hard as a mum though. I had my husband and other male members of the family telling me to back off and let him get on with it and let him accept the consequences for his actions later on, but that would break my heart if I didn't feel I had done all I could to avoid things happening to him. I did back off very seriously for some months. Things certainly didn't improve one bit, but I suppose our relationship was a little easier. As I say, just very recently he has started talking a little and he did feel his new team are 'better'.
I really am not able to advise you what to do. I do sneak a look at my son's pens most days and note the levels down. He has no idea I do that but it gives me peace of mind that I at least know what's going on. He took 100% control from day one so we never had much involvement with the actual practical side of things and he is very private and never used to discuss it with anyone. He has very recently admitted he has told a couple of people at work, so I see that as a little more acceptance on his part too. All I wait for now though it proper conformity.
How often is your daughter seen at clinic, and what insulins is she on? Have they ever tried changing hers? Though I am not really convinced about the M3 mixed insulin, at least if he has that I know it covers him for 8 hours of the day, which is better than just a relatively small dose of novorapid with breakfast then skipping all the rest of it that day.
I actually think, and it's only my opinion, that my son is actually pretty terrified of hypos and his reluctance to get his levels down too much is that he hates them so much he will go out of his way to avoid them. I have mentioned that to his old DSN on a couple of occasions but I have no idea whether they have discussed that with him as he goes into all his consultations on his own.
One more quick thought, is she doing it to lose weight? My son lost 7kg over the past 8 weeks. His team seemed pleased with that (he is a big lad) but didn't seem bothered that his HbA1c is going up and his weight is going down. To me that stinks of poor control. He is actually thrilled to be losing weight whilst seemingly not modifying his eating.
It is so hard being on this side of the fence and feeling powerless to change anything. All I can say is that you are not alone, so do keep on posting on here, if only to vent your feelings. I do hope things improve for you really soon.
Tina
