retinopathy

[dot]

Not really sure if this is the best place to put this, but no doubt someone will move it if it should be somewhere else.

My son (13 and T1 for 18 months) had a letter yesterday saying that his retinopathy screen showed changes in his eye and we would be refered to an eye specialist.

Absolutley gutted about this. He has a hell of a long way to go yet, and I am really upset to think he may be being affected adversley by his diabetes already.

His control is OK, not the best to be sure, but not the worst either. All of his hbA1c results have been aroun 6.5. I don't want to be too hard on him regarding diet as I want him to be "normal" and to eat the same as the rest of us, but carb counting is difficult as we largely eat home made stuff which doesn't have labels to read and so on. At thirteen he is growing fast and needs his grub, particularly the filling type of food (which tend to be carb rich) so avoid snacking. Added to impending puberty making his levels jump about and his response to his insulin rather erratic, it seems so hard to keep his control tight.

Is he going to really struggle with his sight as he has eye changes already/ Any advice and kind words appreciated right now.

 

[iHs]

Not really sure if this is the best place to put this, but no doubt someone will move it if it should be somewhere else.

My son (13 and T1 for 18 months) had a letter yesterday saying that his retinopathy screen showed changes in his eye and we would be refered to an eye specialist.

Absolutley gutted about this. He has a hell of a long way to go yet, and I am really upset to think he may be being affected adversley by his diabetes already.

His control is OK, not the best to be sure, but not the worst either. All of his hbA1c results have been aroun 6.5. I don't want to be too hard on him regarding diet as I want him to be "normal" and to eat the same as the rest of us, but carb counting is difficult as we largely eat home made stuff which doesn't have labels to read and so on. At thirteen he is growing fast and needs his grub, particularly the filling type of food (which tend to be carb rich) so avoid snacking. Added to impending puberty making his levels jump about and his response to his insulin rather erratic, it seems so hard to keep his control tight.

Is he going to really struggle with his sight as he has eye changes already/ Any advice and kind words appreciated right now.

Hi Dot

I presume that your son has the start of background retinopathy and the letter that you have received is a 'warning' letter that you need to take your son's control a bit more seriously. One of the best ways to get to grips with insulin's effect on bg levels is to test more frequently and write all the results down along with insulin injected and carb eaten. By looking at your results, you can then work out if your son is injecting enough insulin so that he is staying within normal targets at ALL times, not just some of them.

Although his hba1c is only 6.5, it's what his daily bg levels are during the day that really count. It's my guess that at times your son's bg levels are most likely going up to over 12 mid morning or mid afternoon and by him only eating 3 big meals a day, he is going way up and then going way down and that's why the blood vessel damage in the eye is starting to happen.

Once you get your son's bg levels to be better balanced, the retinopathy will get better and go.

 

[dot]

There is some truth in that - his figures in the mornings are usually pretty good, but quite often 9 or 10 when he gets home from school. Tricky to get this one right as he makes his own decision regarding what injection he should do at lunchtime.

So much variation in what he does on a daily basis also makes it hard to decide what injection he should do. I am encouraging him to write down all his test and injection rates to help act as a guide, but finding it tough to gauge what he eats with how much to give, especially as the effects don't always seem to be consistant.

 

[jacquiel]

Agree with above poster

My daughter got one of those letters and her control and readings were horrendous, but she didnt need treatment - i hope it is the same for you, because your son seems to be in better control. x

 

[ZACNEMMA]

Hi

My son Zac had the same letter about 4 months ago. He is 14 years old, diagnosed last January and has good control. Like yourself I was devastated to receive the letter saying back ground retinopathy was present. I followed it up with Zacs nurse and was given an early appointment with Consultant. Zac's Consultant had a look at his eyes and could see no retinopathy.... Consultant then discussed with opthamologist who also said there was no back ground retinopathy... Confusing but very relieved. Perhaps you could get in touch with your sons nurse who could advice you.
Zac's consultant was initially confused as to the findings of the screening, as with fair to good control in someone so young it is near impossible to find retinopathy. Follow it up, good luck xx

 

[dot]

Thanks, that makes me feel a bit better. Rang the DN yesterday afternoon and she was really surprised - she says my son's control is alot better than many she sees. She hasn't had any paperwork from the eye people so she is going to chase it up and talk through it with the consultant to see what can be done to get an early appt with the eye specialist.

 

[iHs]

Hi

Although it's rare, it's possible that scanning machines can sometimes reveal damage that isn't worth worrying about so I would go by what your consultant advises.

 

[goji]

Hi

My son Zac had the same letter about 4 months ago. He is 14 years old, diagnosed last January and has good control. Like yourself I was devastated to receive the letter saying back ground retinopathy was present. I followed it up with Zacs nurse and was given an early appointment with Consultant. Zac's Consultant had a look at his eyes and could see no retinopathy.... Consultant then discussed with opthamologist who also said there was no back ground retinopathy... Confusing but very relieved. k xx

The same thing happened to me - I received a letter from digital screening saying I'd developed grade 2 retinopathy in one eye. I worried myself sick. However, when I saw the opthalmologist - he said there was nothing wrong at all. I had a follow up after 6 months and a different opthalmologist confirmed there was no damage. My Hba1c was stable around 6.4 at the time.

The only other thing is that if your son's Hba1c was high before diagnosis - a sudden improvement can cause retinopathy due to tighter control, but if he keeps it at a low level (like 6.5) then it should improve.