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Two years on

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F

fencesitter

Well-Known Member
Relationship to Diabetes
Parent of person with diabetes
Two years ago was the start of the worst six weeks of our lives! William was really poorly with suspected deep cellulitis in his left leg, reasonable assumption as he has lymphoedema. But daily IV antibiotics did nothing to reduce the pain ... Then all the symptoms of diabetes (don't worry, he's just peeing out all those antibiotics said the consultant). A lovely nurse said, let's just do a urine test. The big D! Pain in legs still didn't go away. Turned out he had small tumours (benign) in his tibia, growing fast because of all that sugar. Gradually it all improved as his sugars got under control, and the tumours shrank of their own accord. Two years on, he is doing just fine (touch wood, diabetes review tomorrow), heading for his 16th birthday 😱 how did that happen? I wish someone could have handed me a crystal ball back then - would've saved a lot of heartache :D
 
Glad to hear that William is doing so well now, after such a dreadful beginning for you all! I can't imagine how it must have felt, but you have coped and come out the other side 🙂
 
Thanks Northerner, hopefully tomorrow will go well and he can lapse into his old minimal testing habits again 🙄
 
Well done getting through the first two years relatively unscathed. I do hope things go well tomorrow. Do come on here and let us know how it goes won't you. William has done so well with it all. Long may it continue. Even if it is only minimal testing, it is at least SOME testing. so hold that thought!

Tina xx
 
Sorry I missed this earlier.

Nice to hear William is doing well esp for those teenage years and esp with both his D and lymphoedema to consider, can't be easy.

It amazes me how quick the time flies by. Hope all goes well at review tomorrow x
 
Thanks all. It went fine today, although the consultant is keen for William to test more. Also thinks he's running a bit tight (HbA1C is 5.4). Suggestion to drop Lantus by a couple of units from 20 to 18, up his ratio from 1:8 to 1:10 and be more religious about testing. W does have quite a few hypos (maybe one a day) but no obvious pattern, so the basal suggestion sounds sensible. Luckily the hypos are usually in the threes and he spots them in time to treat them, but I hope he takes the advice as it would be a lot better not to have them at all.
Dr said that he thinks either William has a type of diabetes that isn't too difficult to control, or that he's still on some kind of honeymoon and it might get trickier in the future ... Didn't really give W much credit for his success, although he did say he was 'well managed' and that he didn't usually see numbers like that. Wants him to move on to adult services after the next appointment.
Would be great if W's diabetes is a fairly steady kind, if there is such a thing. Dr also said that if he wanted a pump at some point, he would need to apply on grounds of limited injection sites because he doesn't meet the other criteria. W not interested right now.
William also had his annual bloods done. We went to pizza express afterwards and threw all caution to the wind with an American Hot and a lovely big ice cream for dessert :D
 
William sounds very much like me! Most of my HbA1c's have been in the mid-5s since diagnosis, and I don't have to try too hard (it must be admitted!). If I'm on a honeymoon then it's a long one for me - nearly 5 years 🙂 Hope things stay nice and stable for W too for many a Moon 🙂
 
Willsmum said:
Thanks all. It went fine today, although the consultant is keen for William to test more. Also thinks he's running a bit tight (HbA1C is 5.4). Suggestion to drop Lantus by a couple of units from 20 to 18, up his ratio from 1:8 to 1:10 and be more religious about testing. W does have quite a few hypos (maybe one a day) but no obvious pattern, so the basal suggestion sounds sensible. Luckily the hypos are usually in the threes and he spots them in time to treat them, but I hope he takes the advice as it would be a lot better not to have them at all.
Dr said that he thinks either William has a type of diabetes that isn't too difficult to control, or that he's still on some kind of honeymoon and it might get trickier in the future ... Didn't really give W much credit for his success, although he did say he was 'well managed' and that he didn't usually see numbers like that. Wants him to move on to adult services after the next appointment.
Would be great if W's diabetes is a fairly steady kind, if there is such a thing. Dr also said that if he wanted a pump at some point, he would need to apply on grounds of limited injection sites because he doesn't meet the other criteria. W not interested right now.
William also had his annual bloods done. We went to pizza express afterwards and threw all caution to the wind with an American Hot and a lovely big ice cream for dessert :D
Click to expand...

Keeping that A1c with one hypo a day could mean he fits the 'only able to achieve and on-target A1c with disabling (or risk/fear of disabling) hypoglycemia' in the eyes of some clinics. Especially if his warning signs take a bit of a hammering over the next few years.

Hope W enjoyed the pizza. Mmmmmmmm American hot!

Hope the basal tweaks help to settle things a bit too 🙂 You've learned such a lot in 2 years and are doing brilliantly
 
Wow! Real envy over that HbA1c, and all credit to William for achieving that! Single figures .......... oh how I wish!

My lad has clinic today, though whether or not he tells me his result is another thing. Last one was 12.8, so surely the only way is down. He has discovered beer big time since his last appointment though, and that definitely affects him the next day, so I do expect an improvement brought on simply from the beer!

It will be interesting to see how your transition goes to Adult clinics. My son is still in 'transition' but that's probably because of his wild figures. He was initially told 3 or 4 appointments in transition then the full move. I am not sure if this means a new consultant or not. A shame if it does, as the one he sees at the moment he has real respect for it seems, and I think she could be the one to make the difference.

It will be interesting to see how Williams new basal rates affect his levels. Do you ever tweak that yourselves or leave them to tell you what to do? We have always left well alone and been guided by them, but then they never encouraged us to tweak anything by ourselves. My lad is still rarely using his basal, so until he does I don't expect to see any massive changes.

A big Well Done to William though, keep up the good work!

Tina
 
it is brilliant William is doing so well and things have improved.

I hope the review goes well for you both.
 
How do you both feel about the move to the adult services? we are only a year in and I have always been reassured to know we can stay with the childrens till H is 18 and then if he goes away we will have to find the adult service wherever he goes to. Often the transition nurse is in our appt meeting - but I never warmed to her when in the earlyish days they wanted to tweak a ratio and said H would have to get used to hypos in the night! er no find a ratio that works i say - it did upset me .Well done to William for his numbers and I bet that pizza went down well
 
Tina63 said:
It will be interesting to see how Williams new basal rates affect his levels. Do you ever tweak that yourselves or leave them to tell you what to do?
Click to expand...

He does tweak his own basal now. William is quite confident about making changes, and the consultant really encourages him to do so but stressed yesterday that he needed to do it based on evidence, not just a hunch!
 
delb t said:
How do you both feel about the move to the adult services? we are only a year in and I have always been reassured to know we can stay with the childrens till H is 18 and then if he goes away we will have to find the adult service wherever he goes to. Often the transition nurse is in our appt meeting - but I never warmed to her when in the earlyish days they wanted to tweak a ratio and said H would have to get used to hypos in the night! er no find a ratio that works i say - it did upset me .Well done to William for his numbers and I bet that pizza went down well
Click to expand...

Yes thanks, he really enjoyed the meal out (me too! I love those baby figs with marscapone cheese that they do in Pizza Express 😛).
William's fine about the move to adult services, although we haven't met them yet. We were offered one or two appointments where everyone from the old team comes along to early meetings with the adult team, but it's very hard to choose your appointment times if you want to do that. William is a weekly boarder so we like to get appointments in the holidays if possible - but of course we'd fetch him out of school if he wanted this kind of overlap. His consultant says it's up to him, he could just write a letter of referral, or they could do the overlap. W says he's not worried about going along to adult services and doesn't want a lot of fuss, so I think he'll opt for the letter. I really hope the adult team is as good as the children's one - his current consultant has been great at responding to the sort of boy that William is (rather independent, likes straight talking) so William does respect him.
 
delb t said:
said H would have to get used to hypos in the night! er no find a ratio that works i say - it did upset me
Click to expand...
😱 Not surprised it upset you, what a poor attitude! I think we have been pretty lucky with our team so far. They are keen to troubleshoot and think of ways round problems, although tbh we have been very lucky and not had too many tricky situations to solve so far other than the usual moving goal posts of ratios and tdd. Touch wood!
Do the adult team seem good?
 
Tina, how did it go? Really hope the new consultant is making a difference, and that you can hang on to him for as long as your son would like x
 
I know nothing as yet! Well nothing of any interest anyway. Apparently today he did meet the full adult consultant, a female. He did say she seemed ok. He has only ever seen female consultants! When I asked what his HbA1c was he just flew off the handle and said that just because he had told me a little bit why did I always want to know it all! And with that he stormed off! Oh, the only other thing I did ascertain was that they want to see him again in 8 weeks. They are certainly not letting him off the hook yet.

I will probably find out a little more over the next few days, but I am not holding my breath. He is still seeing the psychologist once every 4 weeks so that's in about a fortnight, and he did talk a bit after his last session with him, so maybe I will find out more in a couple of weeks.

Thanks for asking anyway.

Tina
 
yes I remember having a total meltdown that day! I havnt met any of the adult team yet apart from that one transition nurse.I guess at least we have got 18 months of the childrens team and we only have need to contact occcasionally as H is the model patient at the moment{ mind you halo slipped the other week when he partied abit too hard-} I seem to gather with the adult services here that they can be hard to get hold of when needed - we now have a 24hr call line which has been great and I cant fault the care we have had up to now
 
Yes, it's good to have someone on hand when you need them although when I last made use of our 24-hr service, the consultant available was a general paediatrician and didn't seem at all knowledgeable, so we used Ragnar Hanas instead ... I suppose if it had been really serious we would have gone to A&E so that's another option that would still be open to us.
Another of my worries is how you get your young person to plan ahead and order in supplies!! I can't imagine William managing this aspect of things as his planning skills are not great, but there's still two and a half years to go before he has to face it. I think I will try to gradually put him in charge during his last year at school, so he's got used to monitoring his supplies before he's really out on his own.
 
Tina, I'm very embarrassed that I automatically assumed the consultant was male !!! 😱 😱
One thing I thought was it's good your son is going to his appointments ... even though he's reluctant to share what went on, he is motivated enough to attend which has to be positive, since he's officially an adult now and could just choose not to go. I hope he opens up a bit with you, must be awful not knowing how things went. x
 
Thats a good thought-I organise all supplies at the moment! so will need to work on that. H is going to start looking at Uni's in the summer so maybe cooking would be a good idea too-he hasnt got a clue! and I dont suppose Ive helped by doing it all for him.Our 24 hr line is always the diabetic team which is good and they will call back within 5/10 mins-always good in those early days of complete panic!!
 
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