Hi all ... Feeling sad and a bit frightened today. Our son has been diagnosed 4 years now (he is 20) and has received his eye screening results which show some background retinopathy. I've given him a hug, told him we will help him but I feel so sad and angry for him. Has anyone experienced retinopathy, have you managed to reverse it ? We are trying to wean him off the high carb food onto LC options, have you all any words of advice or support please for him ?
Retinopathy
- Thread starter Alibali
- Start date
Hi everyone, I'm mum to my youngest son who was diagnosed at 15 and who will be 21 this April. I try to help but he is very (at times) resistant to my advice and shuts it all up inside. I never know for sure what is/was adolescence and what is diabetes stress and worry. I wish he would join the forum but I guess that's another thing I have to chip away at. So today wasn't good ... he got the results of his annual eye screening test back which show some background retinopathy.
Bruce Stephens
Well-Known Member
- Relationship to Diabetes
- Type 1
So long as they're not too worried (and are intending to scan him again in 12 months) it's not necessarily anything to worry about. (It can reverse itself with good diabetic control and perhaps intervention on blood pressure (if it's a bit high).)
(I've had background retinopathy for decades now. Sometimes a bit worse, sometimes a bit better.)
Vonny
Well-Known Member
- Relationship to Diabetes
- Type 2
No advice I'm afraid @Alibali just wanted to say how sorry I am, and how well you are doing by supporting your son to eat low carb foods. He must be devastated. It's heartening what @Bruce Stephens has to say though, and I hope that gives you hope and comfort x
Vonny
Well-Known Member
- Relationship to Diabetes
- Type 2
Hi @Alibali, and welcome to the forum 
I've just posted a reply (of sorts!) on your Retinopathy thread.
I was lucky in that my son was diagnosed at around 23, by which time the adolescent sulks had gone, but he remains a private person who won't tell me what he's thinking. His diabetes was well controlled by the time I was diagnosed last April, so he was giving me help before I found this lovely informative forum.
There are quite a few parents here and I'm sure they'll be along soon to give you more advice and support than I can.
Best wishes
I've just posted a reply (of sorts!) on your Retinopathy thread.I was lucky in that my son was diagnosed at around 23, by which time the adolescent sulks had gone, but he remains a private person who won't tell me what he's thinking. His diabetes was well controlled by the time I was diagnosed last April, so he was giving me help before I found this lovely informative forum.
There are quite a few parents here and I'm sure they'll be along soon to give you more advice and support than I can.
Best wishes
- Relationship to Diabetes
- Type 1
Hello @Alibali
I’ve merged your threads to keep your replies in one place
Sorry to hear about your son’s ‘background retinopathy’ letter. I’ve had a couple of those, and I was devastated when I got the first one - which I remember being written in a dreadful and frightening way.
Does your son share his results with you? Or how he feels his diabetes management is going? Numbers and blood results are a really crass way to try to define that, and there are many other ways of assessing how a person feels things are going, and what the balance is like, but some of those blood results can suggest increased levels of chance of damage happening.
If he can manage to gently reduce his glucose instability and variability that should improve his chances of the background changes reversing. He’d need to be careful not to make big changes all at once as that can put additional strain on the microvascular system.
I’ve had two of the ‘background’ letters in my 30 years, with a gap in between and currently all clear, so it certainly is possible for those background changes to disappear. Plus there are a number of stages between background changes and anything that affects sight, and several members have just halted the changes in their tracks they have stayed that way for years and years.
While reducing or moderating carbs can be a helpful strategy it’s by no means essential for effective T1 management. Getting the doses of insulin to match the amounts and absorption profile of carbs is a bit of a dark art, but modern DAFNE style management options with ratios and correction factors can be very effective.
Does your son use a Libre or a different sort of continuous monitor?
I’ve merged your threads to keep your replies in one place
Sorry to hear about your son’s ‘background retinopathy’ letter. I’ve had a couple of those, and I was devastated when I got the first one - which I remember being written in a dreadful and frightening way.
Does your son share his results with you? Or how he feels his diabetes management is going? Numbers and blood results are a really crass way to try to define that, and there are many other ways of assessing how a person feels things are going, and what the balance is like, but some of those blood results can suggest increased levels of chance of damage happening.
If he can manage to gently reduce his glucose instability and variability that should improve his chances of the background changes reversing. He’d need to be careful not to make big changes all at once as that can put additional strain on the microvascular system.
I’ve had two of the ‘background’ letters in my 30 years, with a gap in between and currently all clear, so it certainly is possible for those background changes to disappear. Plus there are a number of stages between background changes and anything that affects sight, and several members have just halted the changes in their tracks they have stayed that way for years and years.
While reducing or moderating carbs can be a helpful strategy it’s by no means essential for effective T1 management. Getting the doses of insulin to match the amounts and absorption profile of carbs is a bit of a dark art, but modern DAFNE style management options with ratios and correction factors can be very effective.
Does your son use a Libre or a different sort of continuous monitor?
Hello @Alibali
I’ve merged your threads to keep your replies in one place
Sorry to hear about your son’s ‘background retinopathy’ letter. I’ve had a couple of those, and I was devastated when I got the first one - which I remember being written in a dreadful and frightening way.
Does your son share his results with you? Or how he feels his diabetes management is going? Numbers and blood results are a really crass way to try to define that, and there are many other ways of assessing how a person feels things are going, and what the balance is like, but some of those blood results can suggest increased levels of chance of damage happening.
If he can manage to gently reduce his glucose instability and variability that should improve his chances of the background changes reversing. He’d need to be careful not to make big changes all at once as that can put additional strain on the microvascular system.
I’ve had two of the ‘background’ letters in my 30 years, with a gap in between and currently all clear, so it certainly is possible for those background changes to disappear. Plus there are a number of stages between background changes and anything that affects sight, and several members have just halted the changes in their tracks they have stayed that way for years and years.
While reducing or moderating carbs can be a helpful strategy it’s by no means essential for effective T1 management. Getting the doses of insulin to match the amounts and absorption profile of carbs is a bit of a dark art, but modern DAFNE style management options with ratios and correction factors can be very effective.
Does your son use a Libre or a different sort of continuous monitor?
thanks so much for your reply, Matt uses a pump and Dexcom which we fund. I believe he needs to make some ratio changes but we have been locked out of his carelink account which I am trying to get fixed. It doesn't help that he has now moved over to the adult clinic and they seem to be much harder to get hold of than the children team, who were lovely. Is the DAFNE management basically carb counting ? We were taught that at diagnosis but wonder if this course might be a bit more in-depth.
I went on the local equivalent of the DAFNE course 12 years after my diagnosis and 12 years after starting to carb count. They went into a lot more detail about carb counting but also much more such as alcohol, exercise, illness, how to adjust ratios, how to work out what to adjust ratios to, and more.
But there were two things which made it even more worthwhile
1. in my area, the DAFNE course is a prerequisite for the pump (obviously not needed for your son)
2. I got to meet and talk to other people with Type 1. I learnt how they coped and where they struggled. I learnt I was not alone. I learnt I was different in some areas but less so in others. And, the biggest lesson for me was seeing how poor management in the past (three out of 5 women had not taken their insulin when they were teenagers in order to lose weight) can impact your life.
- Relationship to Diabetes
- Type 1
Yes that’s my understanding of DAFNE too @helli
It also has various principles which they apply to diabetes management, giving you a more structured consistent approach for what to do in certain situations - so not necessarily what you might do while ‘winging it’, but worth trying out to see if the consistency is helpful.
It also has various principles which they apply to diabetes management, giving you a more structured consistent approach for what to do in certain situations - so not necessarily what you might do while ‘winging it’, but worth trying out to see if the consistency is helpful.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
I was lucky to get my DAFNE course just 8 months after diagnosis but there was a lady on it the same age as me who had been diagnosed 50 years and a guy who had 15years experience as well as 2 newly diagnosed younger girls and a newly diagnosed older guy who was struggling to take everything in. As @helli says it is a very intensive course designed to keep you safer in all manner of situations and sharing personal experiences is encouraged and there is no judgement over personal choices.... so if someone is an alcoholic or a young person going out partying all night, they are helped to understand how they can manage their diabetes as safely as possible around their drinking. Eating disorders certainly seem to feature quite a bit and you learn so much from just spending time with other Type1 diabetics. I keep in touch with one lovely young girl from my course and we help each other with suggestions when things aren't going right and generally offer support to each other. The DAFNE Educators are very well trained to create an atmosphere of sharing and learning from each other.
Whilst online learning is better than nothing, I would highly recommend trying to get on a face to face DAFNE course when they are able to be safely reinstated. It just helps you to feel more normal spending a week with others. Even something simple like injecting in public.... up to that point I had always lefty the room or used the toilets when out for a meal.... but the young girls, particularly, were so at ease with just exposing a bit of midriff and injecting in the classroom at lunchtime it was quite inspirational and liberating to be able to do the same.
Whilst online learning is better than nothing, I would highly recommend trying to get on a face to face DAFNE course when they are able to be safely reinstated. It just helps you to feel more normal spending a week with others. Even something simple like injecting in public.... up to that point I had always lefty the room or used the toilets when out for a meal.... but the young girls, particularly, were so at ease with just exposing a bit of midriff and injecting in the classroom at lunchtime it was quite inspirational and liberating to be able to do the same.