Well I have mixed news, most of it very good but one worrying thing.
The history, as most of you know, is that my son (18) has been in denial/rebellion for some significant time now (18+ months) and his last 3 HbA1cs have been 12.8, 12.6 and 12.8 again. I have been so scared for his future, plus so frustrated having been shut out of consultations for well over a year now, son won't even remotely talk about it, feeling I have nowhere to turn to try and make a breakthrough, and only having you lot to help me through.
Things seemed to be going from bad to worse. Testing regularly has NOT happened for the past 18 months either, just the odd test here and there, normally when he has had a session on the alcohol and is feeling rough, but that's it. The figures when he has tested have been alarming, never below about 11 or 12 on waking, and figures in the high teens and even 20's appearing on his meter on the occasional tests he did do.
A few weeks ago I decided to write directly to his consultant to express my worries/fears/thoughts on the way forward for my son. One of the suggestions I made was to put him onto twice daily mixed insulin to try and get some regular injecting going on. He was often only injecting once a day (mixed insulin). He had started orginally on Lantus and Novorapid but was refusing to inject at school/college, so then skipped more and more, so was put on M3 mixed insulin in the mornings with still Novorapid and Lantus evenings/bedtime. He started 'forgetting' his teatime Novorapid, then started dropping the Lantus too, so was essentially only on one dose of M3 a day (mornings). I know mixed insulins are 'old school' but he seemed to trust his M3, so I thought trying that twice a day had to be worth a shot.
I was over the moon to find out a few weeks ago his consultant put him on that. She did say at the outset (this I got from his follow-up letter) that she felt the doses would need upping, but it was a starting point and with some testing(!) he/they could tweak his doses. Well for the first 3 weeks he amazingly did as he was asked and did inject twice a day, I believe just missing once. No testing, so no idea on a day to day basis what was going on, but his next HbA1c came back at 11.something after only 3 weeks on it. Not sure yet what the 'something' is, but hey, it's lower than 12.8 - that to me is simply BRILLIANT. Over the moon
Better still, following that next appointment (last week) he has suddenly started testing. Ok, only once a day, but once a day is a SIGNFICANT improvement over once in 3 months, which is what it was before. Levels are still too high, but definitely getting better. We have even had a waking level a couple of days ago of 7.3. That's getting so near normal, I could cry! He has had a few below 10, which again is significant. The last results before this on his meter were in March, all the morning after drinking sessions, and figures ranged from 12 to 19.7. So figures below 10 are wonderful. I know they gave him new doses to try last Thursday, I don't know what they are, but the pen level is still going down at an appropriate rate so I know he is still on top of it. He has never had the confidence to adjust his doses himself, but I believe he is in regular contact with his DSN so hopefully she will tweak again if he is able to give her some figures.
His mood has improved significantly too. I am getting my old boy back Over the moon at that bit too. He still refuses to talk about anything diabetes related, so I will just have to carry on waiting for that if and when he ever does want to talk.
On the down side though, he said to me a week or so ago he had this spot on his leg he was worried about. He was going to show me, then put off doing so. Then on Monday he mentioned it again. I asked him to show me, but he put it off again. Then Tuesday he woke saying he thought he had an infection in his index finger as it was red, swollen, very painful and he couldn't bend it. I then asked to see his leg (thigh). He has this very hard red raised lump with a dark scab in the middle. It's probably the size of a penny, maybe a bit bigger. He said his thigh was aching all around it too. He wondered if he should see a doctor.
I decided to ring for advice. I mentioned he is type 1, so was told they would fit him in with their 'diabetes nurse'. I know from you all that this could be any old nurse with very limited knowledge, so was rather sceptical but after being reassured she could prescribe antibiotics if necessary, took him along. He went in alone, and the nurse was not really interested in his finger, but took one look at his leg and said she would be back in a minute. She brought two doctors in to look at it. They all looked and poked and prodded and ummed and ahhed, and the upshot is that he has some very high dose antibiotics for the next 7 days, and if the redness hasn't gone in 7 days they want to see him back. They told him it is all probably due to his high blood sugar levels.
This was all on Tuesday so he started his antibiotics immediately. By last night (Wednesday) he felt things were worse, his index finger on the other hand has started to get painful too. Oh and what I didn't say is that Tuesday night he knocked the scab off when pulling up his jeans so called me to look at it. It's just like a big crater in the middle, quite alarming how deep it is. Is this what an ulcer looks like? Is it possible to have an ulcer on your thigh? I thought they happened on feet and lower legs. It does throw pus out apparently, but the scab that keeps forming is dark.
I know antibiotics take 24/48 hours to kick in, but do we just sit on this until next week, or should I get him back certainly on Friday if things don't start turning round by then, or am I just being impatient? I don't believe they took any swabs or blood or anything, just looked at it.
I am very mixed about this happening right now. In one way I think it will make him sit up and take real notice about bringing his levels under proper control, but equally, I feel it so cruel at the exact time when he is making some significant progress for this to be happening and don't want this to make him think 'Oh sod it, what's the point.' He has obviously had 3 more strangers telling him this week his levels are too high and it's all his fault and I don't want him going backwards again as a rebellious thing.
I guess as I have been doing for some significant time now, I just have to sit quietly and observe, and be here when he needs me. At least he did turn to me when he needed me (as he always does in times of trouble) and I know I can gently ask him when he gets up how it is all looking/feeling this morning. I just feel it's a cruel blow for him right now, just when he is doing so well. I just hope the antibiotics get this sorted quickly and it doesn't turn any more nasty.
I really do feel we are starting to turn a corner though. So many times before I have felt we had a breakthrough, then it all comes crashing down 48 hours later. This regular injecting has been going on for nearly 5 weeks now though, and testing for a week, so this really is better than I have seen in a very long time and I truly believe this is the beginning of him starting to accept things. He goes back in another 7 weeks, so I have to wait that long to see his next HbA1c, but by then I hope to be dancing on the rooftops!
I will let you know how things go with his leg. Thanks for listening. End of mammouth essay!
Tina
The history, as most of you know, is that my son (18) has been in denial/rebellion for some significant time now (18+ months) and his last 3 HbA1cs have been 12.8, 12.6 and 12.8 again. I have been so scared for his future, plus so frustrated having been shut out of consultations for well over a year now, son won't even remotely talk about it, feeling I have nowhere to turn to try and make a breakthrough, and only having you lot to help me through.
Things seemed to be going from bad to worse. Testing regularly has NOT happened for the past 18 months either, just the odd test here and there, normally when he has had a session on the alcohol and is feeling rough, but that's it. The figures when he has tested have been alarming, never below about 11 or 12 on waking, and figures in the high teens and even 20's appearing on his meter on the occasional tests he did do.
A few weeks ago I decided to write directly to his consultant to express my worries/fears/thoughts on the way forward for my son. One of the suggestions I made was to put him onto twice daily mixed insulin to try and get some regular injecting going on. He was often only injecting once a day (mixed insulin). He had started orginally on Lantus and Novorapid but was refusing to inject at school/college, so then skipped more and more, so was put on M3 mixed insulin in the mornings with still Novorapid and Lantus evenings/bedtime. He started 'forgetting' his teatime Novorapid, then started dropping the Lantus too, so was essentially only on one dose of M3 a day (mornings). I know mixed insulins are 'old school' but he seemed to trust his M3, so I thought trying that twice a day had to be worth a shot.
I was over the moon to find out a few weeks ago his consultant put him on that. She did say at the outset (this I got from his follow-up letter) that she felt the doses would need upping, but it was a starting point and with some testing(!) he/they could tweak his doses. Well for the first 3 weeks he amazingly did as he was asked and did inject twice a day, I believe just missing once. No testing, so no idea on a day to day basis what was going on, but his next HbA1c came back at 11.something after only 3 weeks on it. Not sure yet what the 'something' is, but hey, it's lower than 12.8 - that to me is simply BRILLIANT. Over the moon
Better still, following that next appointment (last week) he has suddenly started testing. Ok, only once a day, but once a day is a SIGNFICANT improvement over once in 3 months, which is what it was before. Levels are still too high, but definitely getting better. We have even had a waking level a couple of days ago of 7.3. That's getting so near normal, I could cry! He has had a few below 10, which again is significant. The last results before this on his meter were in March, all the morning after drinking sessions, and figures ranged from 12 to 19.7. So figures below 10 are wonderful. I know they gave him new doses to try last Thursday, I don't know what they are, but the pen level is still going down at an appropriate rate so I know he is still on top of it. He has never had the confidence to adjust his doses himself, but I believe he is in regular contact with his DSN so hopefully she will tweak again if he is able to give her some figures.
His mood has improved significantly too. I am getting my old boy back
Over the moon at that bit too. He still refuses to talk about anything diabetes related, so I will just have to carry on waiting for that if and when he ever does want to talk.On the down side though, he said to me a week or so ago he had this spot on his leg he was worried about. He was going to show me, then put off doing so. Then on Monday he mentioned it again. I asked him to show me, but he put it off again. Then Tuesday he woke saying he thought he had an infection in his index finger as it was red, swollen, very painful and he couldn't bend it. I then asked to see his leg (thigh). He has this very hard red raised lump with a dark scab in the middle. It's probably the size of a penny, maybe a bit bigger. He said his thigh was aching all around it too. He wondered if he should see a doctor.
I decided to ring for advice. I mentioned he is type 1, so was told they would fit him in with their 'diabetes nurse'. I know from you all that this could be any old nurse with very limited knowledge, so was rather sceptical but after being reassured she could prescribe antibiotics if necessary, took him along. He went in alone, and the nurse was not really interested in his finger, but took one look at his leg and said she would be back in a minute. She brought two doctors in to look at it. They all looked and poked and prodded and ummed and ahhed, and the upshot is that he has some very high dose antibiotics for the next 7 days, and if the redness hasn't gone in 7 days they want to see him back. They told him it is all probably due to his high blood sugar levels.
This was all on Tuesday so he started his antibiotics immediately. By last night (Wednesday) he felt things were worse, his index finger on the other hand has started to get painful too. Oh and what I didn't say is that Tuesday night he knocked the scab off when pulling up his jeans so called me to look at it. It's just like a big crater in the middle, quite alarming how deep it is. Is this what an ulcer looks like? Is it possible to have an ulcer on your thigh? I thought they happened on feet and lower legs. It does throw pus out apparently, but the scab that keeps forming is dark.
I know antibiotics take 24/48 hours to kick in, but do we just sit on this until next week, or should I get him back certainly on Friday if things don't start turning round by then, or am I just being impatient? I don't believe they took any swabs or blood or anything, just looked at it.
I am very mixed about this happening right now. In one way I think it will make him sit up and take real notice about bringing his levels under proper control, but equally, I feel it so cruel at the exact time when he is making some significant progress for this to be happening and don't want this to make him think 'Oh sod it, what's the point.' He has obviously had 3 more strangers telling him this week his levels are too high and it's all his fault and I don't want him going backwards again as a rebellious thing.
I guess as I have been doing for some significant time now, I just have to sit quietly and observe, and be here when he needs me. At least he did turn to me when he needed me (as he always does in times of trouble) and I know I can gently ask him when he gets up how it is all looking/feeling this morning. I just feel it's a cruel blow for him right now, just when he is doing so well. I just hope the antibiotics get this sorted quickly and it doesn't turn any more nasty.
I really do feel we are starting to turn a corner though. So many times before I have felt we had a breakthrough, then it all comes crashing down 48 hours later. This regular injecting has been going on for nearly 5 weeks now though, and testing for a week, so this really is better than I have seen in a very long time and I truly believe this is the beginning of him starting to accept things. He goes back in another 7 weeks, so I have to wait that long to see his next HbA1c, but by then I hope to be dancing on the rooftops!
I will let you know how things go with his leg. Thanks for listening. End of mammouth essay!
Tina
