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My youngest twin has Down Syndrome. She struggles to pronounce 's' and 'x'.
Soapbox comes out something like: "hopebok" - the hope part which is close to what I would like this post to be.
Yet to be mischievous she calls it a 'bubblebok' 'cos that is what soap does.
From my own reading and experience, not as health professional advice or opinion:
(And if you wish to skip down to the examples/discussion and not wade through the explanation, just find #.)
Diabetes Control and Complication Trial (DCCT)* for TIDs began in USA in 1983.
TIDs in the first 5 years on insulin and some in the first 15 years were in this trial. (Age range 13 to 39)
Random picks were made to one group (INT) for intensive treatment, e.g. (3 + insulin inj, /day, BSL testing+++)
or the other group (CONV) for more conventional treatment, (1 to 2 shots of insulin per day, less testing).
By the 6 1/2 year mark a number of diabetic complications started showing up in people, CONV gp > INT gp.
By 10 years the trial was stopped as the difference between the groups was too great to continue, CONV >> INT.
The CONV group was instructed in the intensive treatment techniques and then all members of the trial were followed
along in the Epidemiology of Diabetes Intervention and Complications (EDIC)* from 1993 and is still going today.
* https://www.alrt.com/Media/Default/Downloads/DCCT-EDIC.pdf
and http://care.diabetesjournals.org/content/37/1/9
The thing is that even when some of the INT group had slacked off a bit with their 'intensive' treatment by and
after the 10 year mark,. and some of the CONV group started up the intensive treatment, differences between the
original groups in number and appearance of diabetic complications ; eye, kidney, nerve, continued. And this
later included things like heart, stroke and artery problems.
(And just in case some readers from their past experience with diabetes might be identifying themselves more
with the CONV group than the INT group I have some comments on that at ## - below the discussion.)
Discusion: #..............................................................................................................................................................#
My endo's viewpoint? The first 6 1/2 years matters. (and other interpretations are welcome)
For a number of us, 1989 or 1993 were past the 6 1/2 or 10 year mark.
So Who does the knowledge of DDCT and EDIC help most? according to my endo, first - children,
diagnosed with T1D, (they have the longest time ahead), second - adults diagnosed with TID or T3D and then
depending on early diagnosis, those with LADA and T2D.
My point? Some examples for consideration and hopefully to reach consensus about: and every other example/suggestion gratefully accepted.
1) Do we inform those whose who post on-line and whose diabetes history suggests they or the one they care for could benefit from knowledge of these trials? Just suggest a reference 'in case the doctor did not get around to it'.? And when not to?
When I type DCCT into the 'urchbok' (searchbox) I get confused by one answer being to do the BSL units and
the other to do with the trials. Could that be made easier to search?
2) And do we expect that that one or more HCP has informed them already about such trial results? -
I must admit over 50 years seeing HPCs regularly I take the approach of the fictional hero, Jack Reacher:
"Hope for the best, plan for the worst." The HCP might forget, not know, or think it will be overloading the patient or
be too casual to mention it, or not wish to alarm the patient, the child is too young etc etc.
3) Do we regard it as an obligation on HCPs that they also provide all the knowledge and skill to help these
persons, particularly children, to obtain the best BSLs possible? - what the best possible methods are possible and not be
worrying about economics, the distractions of big Food but using all approaches, from diet to insulins to lifestyle to technology??
If I am a parent of a child with diabetes wouldn't I wish to know?
4) What suggestions can we make to such persons on-line without giving actual advice? Say, about food, about testing etc?
And if outlining what one's own approach to an issue or problem is - do we need to especially point out the pro's and con's about BSLs etc? - as well as state that we are in the zero to ? 10 year span or later than that?
##...................................................................................................................................................................................##
We know from examples posted on this site of diabetics who have slowed, or stopped or reversed their
diabetes complication(s). I tried looking for some reports in literature and found:
"Reversal of diabetic retinopathy by subcutaneous insulin infusion: a case study."
Kend at al Br J Ophthalmology 1981 Vol 65 307-311. Note 1981 - before DCCT has started. Not many reportsto find
and I see lots of reports about eye injections - not saying that this is not the right treatment but that early intervention and
the 6 1/2 year 'golden opportunity' may be being missed.
But we have more technology and knowledge these days, better detection of early changes in eyes and kidneys and all that.
All is not lost!!
To finish - the other twin pipes up and asks "But how do you have bubbles in a box when they are round and
the box is square"?
What to say? "Well, they need to work out how to fit in with each other".
"Aw , you're silly, Dad. I could make up a better story than that!!"? "Yeah, hilly mad Dad" !!
Soapbox comes out something like: "hopebok" - the hope part which is close to what I would like this post to be.
Yet to be mischievous she calls it a 'bubblebok' 'cos that is what soap does.
From my own reading and experience, not as health professional advice or opinion:
(And if you wish to skip down to the examples/discussion and not wade through the explanation, just find #.)
Diabetes Control and Complication Trial (DCCT)* for TIDs began in USA in 1983.
TIDs in the first 5 years on insulin and some in the first 15 years were in this trial. (Age range 13 to 39)
Random picks were made to one group (INT) for intensive treatment, e.g. (3 + insulin inj, /day, BSL testing+++)
or the other group (CONV) for more conventional treatment, (1 to 2 shots of insulin per day, less testing).
By the 6 1/2 year mark a number of diabetic complications started showing up in people, CONV gp > INT gp.
By 10 years the trial was stopped as the difference between the groups was too great to continue, CONV >> INT.
The CONV group was instructed in the intensive treatment techniques and then all members of the trial were followed
along in the Epidemiology of Diabetes Intervention and Complications (EDIC)* from 1993 and is still going today.
* https://www.alrt.com/Media/Default/Downloads/DCCT-EDIC.pdf
and http://care.diabetesjournals.org/content/37/1/9
The thing is that even when some of the INT group had slacked off a bit with their 'intensive' treatment by and
after the 10 year mark,. and some of the CONV group started up the intensive treatment, differences between the
original groups in number and appearance of diabetic complications ; eye, kidney, nerve, continued. And this
later included things like heart, stroke and artery problems.
(And just in case some readers from their past experience with diabetes might be identifying themselves more
with the CONV group than the INT group I have some comments on that at ## - below the discussion.)
Discusion: #..............................................................................................................................................................#
My endo's viewpoint? The first 6 1/2 years matters. (and other interpretations are welcome)
For a number of us, 1989 or 1993 were past the 6 1/2 or 10 year mark.
So Who does the knowledge of DDCT and EDIC help most? according to my endo, first - children,
diagnosed with T1D, (they have the longest time ahead), second - adults diagnosed with TID or T3D and then
depending on early diagnosis, those with LADA and T2D.
My point? Some examples for consideration and hopefully to reach consensus about: and every other example/suggestion gratefully accepted.
1) Do we inform those whose who post on-line and whose diabetes history suggests they or the one they care for could benefit from knowledge of these trials? Just suggest a reference 'in case the doctor did not get around to it'.? And when not to?
When I type DCCT into the 'urchbok' (searchbox) I get confused by one answer being to do the BSL units and
the other to do with the trials. Could that be made easier to search?
2) And do we expect that that one or more HCP has informed them already about such trial results? -
I must admit over 50 years seeing HPCs regularly I take the approach of the fictional hero, Jack Reacher:
"Hope for the best, plan for the worst." The HCP might forget, not know, or think it will be overloading the patient or
be too casual to mention it, or not wish to alarm the patient, the child is too young etc etc.
3) Do we regard it as an obligation on HCPs that they also provide all the knowledge and skill to help these
persons, particularly children, to obtain the best BSLs possible? - what the best possible methods are possible and not be
worrying about economics, the distractions of big Food but using all approaches, from diet to insulins to lifestyle to technology??
If I am a parent of a child with diabetes wouldn't I wish to know?
4) What suggestions can we make to such persons on-line without giving actual advice? Say, about food, about testing etc?
And if outlining what one's own approach to an issue or problem is - do we need to especially point out the pro's and con's about BSLs etc? - as well as state that we are in the zero to ? 10 year span or later than that?
##...................................................................................................................................................................................##
We know from examples posted on this site of diabetics who have slowed, or stopped or reversed their
diabetes complication(s). I tried looking for some reports in literature and found:
"Reversal of diabetic retinopathy by subcutaneous insulin infusion: a case study."
Kend at al Br J Ophthalmology 1981 Vol 65 307-311. Note 1981 - before DCCT has started. Not many reportsto find
and I see lots of reports about eye injections - not saying that this is not the right treatment but that early intervention and
the 6 1/2 year 'golden opportunity' may be being missed.
But we have more technology and knowledge these days, better detection of early changes in eyes and kidneys and all that.
All is not lost!!
To finish - the other twin pipes up and asks "But how do you have bubbles in a box when they are round and
the box is square"?
What to say? "Well, they need to work out how to fit in with each other".
"Aw , you're silly, Dad. I could make up a better story than that!!"? "Yeah, hilly mad Dad" !!