eye test - bit worried

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bev

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Hi all,
Alex had his eye screening today at the hospital. I asked if I could have a look and the lady zoomed in for me to see. I asked if there were any problems and she said only a small little line that she would look at later as she didnt have time due to others appointments. She showed it to me and it just looked like a little 'v' shape on the screen. She said we will get the results in 2 weeks. I do feel a bit upset because although the hba1c was 9.6 last year - it is now 7.1 and it has taken a lot of hard work and sleepless nights (as you will all know) - and he has only been diagnosed for 18 months and only 9 of them on MDI were control was awful. It does make me angry that you have to wait until your child is 12 to get these tests done when your child could have been diagnosed when they were 2 or 3 - and if there is damage already - what on earth would things have been like if he had been diagnosed years ago?

The lady said that if the 'v' shape was still there next year and the year after - then they might consider some form of treatment - but sometimes these things go away of their own accord and then went on to say that things will probably get a lot worse as he goes into teenage years and sugars are all over the place! But I feel really worried and now paranoid about him having levels over 7.:(


Thankfully he didnt need to have the drops in his eyes!🙂Bev
 
If it was like the setup when I get mine done, it was a nurse or civilian worker that did the photograph and has limited expertise. The digital photo will be examined by a consultant. It doesn't sound like he has any 'real' problems with his eyes. Bear in mind that, to quote the NHS, if diabetic retinopathy is detected early enough, it can be treated effectively using laser treatment.

Don't want to frighten you, but in case you get to see his photo, this site has a number of example photos (with problems): http://www.mrcophth.com/guidelinesindiabeticretinopathymanagement/diabeticretinopathyatlas.html
The 'cotton wool spots' are one of the first signs.

on this page: http://www.mrcophth.com/guidelinesindiabeticretinopathymanagement/section4.html I found your reason for starting at age 12.


general recommendations proposed in a parallel guidelines

document in preparation by the European Consensus Document and the

conference of Scottish Royal Colleges:

.

* all patients aged over 12 years and/or entering puberty

should be screened
* . screening should be performed annually and should

include a measurement of visual acuity and examination
of the fundus through a dilated pupil
* . screening should be performed in the most appropriate

and comprehensive manner and will involve a combination of:
.
a. diabetologists for patients attending hospital diabetic
clinics
.
b. optometrists, usually in densely populated urban areas,
as primary screeners for diabetic patients being treated
by their general practitioner, if the GP does not wish to
perform the screening him/herself
.
c. photographic screening for patients for whom neither of
the above is available eg. in rural communities. Photographs
would be evaluated by primary screeners at diabetic clinics
or GP practices.​
 
bev said:
Hi all,
Alex had his eye screening today at the hospital. I asked if I could have a look and the lady zoomed in for me to see. I asked if there were any problems and she said only a small little line that she would look at later as she didnt have time due to others appointments. She showed it to me and it just looked like a little 'v' shape on the screen. She said we will get the results in 2 weeks. I do feel a bit upset because although the hba1c was 9.6 last year - it is now 7.1 and it has taken a lot of hard work and sleepless nights (as you will all know) - and he has only been diagnosed for 18 months and only 9 of them on MDI were control was awful. It does make me angry that you have to wait until your child is 12 to get these tests done when your child could have been diagnosed when they were 2 or 3 - and if there is damage already - what on earth would things have been like if he had been diagnosed years ago?

The lady said that if the 'v' shape was still there next year and the year after - then they might consider some form of treatment - but sometimes these things go away of their own accord and then went on to say that things will probably get a lot worse as he goes into teenage years and sugars are all over the place! But I feel really worried and now paranoid about him having levels over 7.:(


Thankfully he didnt need to have the drops in his eyes!🙂Bev
Click to expand...

I dont understand why the long wait for the eye tests to be honest, I been diabetic since 5 yrs old and now 26 the first of me getting a pic done of the bk of my eye was around 5 years ago :confused:
On the other hand I had dka for 3 months due to a dodgy meter not letting on my bloods were so bad (when I was 16) at the moment I have background mild retinopathy which does not need treatment just checked every year...... I know its easy to say but as your son is so young, i think they might be worrying you more than you need to be.... if it was something really serious then they would see him quicker than a year....
Please dont worry too much about going over 7 sometimes, he is heading for his teenage years and I guess that staying below 7 all the time will be impossible x
 
Vicsetter said:
If it was like the setup when I get mine done, it was a nurse or civilian worker that did the photograph and has limited expertise. The digital photo will be examined by a consultant. It doesn't sound like he has any 'real' problems with his eyes. Bear in mind that, to quote the NHS, if diabetic retinopathy is detected early enough, it can be treated effectively using laser treatment.

Don't want to frighten you, but in case you get to see his photo, this site has a number of example photos (with problems): http://www.mrcophth.com/guidelinesindiabeticretinopathymanagement/diabeticretinopathyatlas.html
The 'cotton wool spots' are one of the first signs.

on this page: http://www.mrcophth.com/guidelinesindiabeticretinopathymanagement/section4.html I found your reason for starting at age 12.


general recommendations proposed in a parallel guidelines

document in preparation by the European Consensus Document and the

conference of Scottish Royal Colleges:

.

* all patients aged over 12 years and/or entering puberty

should be screened
* . screening should be performed annually and should

include a measurement of visual acuity and examination
of the fundus through a dilated pupil
* . screening should be performed in the most appropriate

and comprehensive manner and will involve a combination of:
.
a. diabetologists for patients attending hospital diabetic
clinics
.
b. optometrists, usually in densely populated urban areas,
as primary screeners for diabetic patients being treated
by their general practitioner, if the GP does not wish to
perform the screening him/herself
.
c. photographic screening for patients for whom neither of
the above is available eg. in rural communities. Photographs
would be evaluated by primary screeners at diabetic clinics
or GP practices.​
Click to expand...


Hi, thanks so much for the link. I have sat and studied all the pictures and I cant see any resemblance to what I saw today as it was so tiny. I think that must be a good thing (?).

I am probably over reacting, but I went in there feeling that there wouldnt be a problem and I suppose that I was just quite shocked that I was told that there might! Lets just hope that the results will give us good news.🙂Bev
 
Sometimes these people talk without thinking, they are speaking their own language and don't realise what the patient's parents understand what they are saying. I've had 3 yrs of photos now, The first yr the letter said - some sign on diabetic degeneration, no action needed. (vision express took a photo and said can't see anything wrong),
second yr the letter said the same as the first yr, which puzzled me.
this yr it said that there was no change since last yr - which I took to be good as I hadn't got worse, but I guess it could have said the same as the other 2 letters.
I'm sure you know, all you can do is do your best for Alex and be there when he needs you. Worrying about what might happen is the worse thing any of us can do.
 
There isn't likely to be anything to worry about. Sometimes the operatives tell you if they see anything so that you are prepared for the worst. Every time I go the lady tells me she can see this or that, but so far it hasn't been anything to worry about!
 
Hi Bev,

For the past two times I've been I've had what goes by the name of "early diabetic change". I was told that if I got my HbA1C down this would go. Well, that was two years before pumping so I reckon I can do that. I hope all goes well for Alex.

Tom
 
Bev, try not to worry too much about the results. When I had my scan in September (pre-insulin treatment when my BG's had been really high for the last year) they told me I had background retinopathy.

When I had an eye test at my opticians earlier this month I mentioned my scan results to the optician and she told me that there was barely any sign of it now.

I guess the fact that the insulin has lowered my BG's considerably since October when I first started injecting, has almost reversed the swelling of the blood vessels in my eyes.
 
Just remembered I was advised (unofficially) that vitamin C tablets were supposed to be good for counteracting the effects of diabetic retinopathy and I take a 1000mg tablets in the morning. Not sure whether that should be reduced for Alex, but it doesn't cost much.
 
bev said:
Hi all,
Alex had his eye screening today at the hospital. I asked if I could have a look and the lady zoomed in for me to see. I asked if there were any problems and she said only a small little line that she would look at later as she didnt have time due to others appointments. She showed it to me and it just looked like a little 'v' shape on the screen. She said we will get the results in 2 weeks. I do feel a bit upset because although the hba1c was 9.6 last year - it is now 7.1 and it has taken a lot of hard work and sleepless nights (as you will all know) - and he has only been diagnosed for 18 months and only 9 of them on MDI were control was awful. It does make me angry that you have to wait until your child is 12 to get these tests done when your child could have been diagnosed when they were 2 or 3 - and if there is damage already - what on earth would things have been like if he had been diagnosed years ago?

The lady said that if the 'v' shape was still there next year and the year after - then they might consider some form of treatment - but sometimes these things go away of their own accord and then went on to say that things will probably get a lot worse as he goes into teenage years and sugars are all over the place! But I feel really worried and now paranoid about him having levels over 7.:(


Thankfully he didnt need to have the drops in his eyes!🙂Bev
Click to expand...

Bev, please try not to worry. I have read in Pumping Insulin, that when people go on pumps and control improves dramatically very quickly, it can cause a TEMPORARY problem with the eyes. Im sure someone else will be able to explain better but it was quite technical, to do with proteins i think🙄

But, it also said this generally recifies itself over the next year or so. I suppose thats why the nurse said it may go away? I sure Alex will be fine.
 
nothing to do with my eye tests but a short while ago i had to have a mammogram..it was scarey when they looked and said they had to do some more pics...after 1hr waiting the consultant was available to have a look... and there was NO problem.. wait till they have had a proper look x good luck to you both🙂
 
No advice Bev, just hope everything goes well with Alex.
 
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