Retinopathy screening

[wsmum]

Hello all. My son, aged 13, was diagnosed T1 in March. He is doing just fine with the diabetes, but he has had lots of other health issues (to do with lymphoedema in his legs) and has had loads of hospital appointments since February. He missed half a term of school, and will be having some kind of surgery shortly for a benign tumour in his tibia. We were asked to bring him for retinopathy screening, so I asked our DN whether it was really necessary. She said no, it will be fine to leave it for a year, but I've had a letter from the hospital saying we are taking a grave risk with our son's health. Maybe it's a standard letter, but it does make me a bit concerned! I wanted to back off a bit so my son can have as much normality as possible right now, but maybe we should reinstate the appointment? Any opinions on whether it's OK to wait a year after diagnosis for a first appointment? I'll probably call the hospital for another chat but would be interested in your views. Thanks, Catherine

 

[liklejojo]

I would 100% get your son checked out yearly at least. I've been diagnosed since the age of 9 and my mum always got me checked yearly with approval from the hospital. Most opticians will do the test so give them a call and see what they say.
No offense to district nurses but unless there really up on their diabetes care I don't think they can advise as well as your son's hospital diabetes team. And if your getting letters from the hospital saying to get your son's eyes looked at I would definitely say there the one's to listen too. Good Luck

 

[noblehead]

Catherine,

I would definitely ring the hospital and speak with the Ophthalmology team just to be safe.

Nigel

 

[SophiaW]

Our consultant has said that it's not necessary for my daughter to be tested until she is 12 years old. I'm not sure why they feel a younger child can safely go untested for a number of years before the age of 12 but someone like your son should be tested straight away because he is over 12. Maybe there's something to do with age and growing, I don't know. But despite the advice not to get checked I do routinely take my daughter (and my non-diabetic son) for an eye test every year and they photograph the back of the eye to keep a record of their eye health. We have this done at our local optician. It's a non-invasive test and quite quick and simple. Personally I would want to have my child tested, even if it's unlikely for any problems to show up now you at least will have a starting point so that if changes do happen you'll have something to compare against. If you really don't want to have him checked yet speak to your consultant first to make sure it's safe to leave if for another year, it probably will be okay but make sure.

 

[ams162]

we have never had a retinopathy screening as they have told us the same 12 years altho dylans nurse said she may get dylan tested this year as he has had diabetes since the age of 4 so has had it a long time to not have one till 12

anna marie

 

[wsmum]

Hello everyone. Thanks for your replies
I called the hospital and after a brief chat we agreed that screening immediately on diagnosis probably isn't necessary for William, so he's going to have an appointment in his October half term when all the other medical stuff should hopefully be sorted. I feel happy with this as waiting a year might have been a bit long. I agree with the other parents on here that it does seem strange to say a child can wait years until they get screening if they're younger than 12, even if they've had diabetes for years, but as soon as you're older than 12 you get an instant appointment.
Anyway, thanks again. I'm v.pleased to have found this site!
Catherine

 

[Jen&Khaleb]

In Australia the guideline is to have eye screening at the 5 year mark and then every year after that. Khaleb is booked in to see the Opthalmologist but there may be a bit of a wait list. Khaleb also has a range of problems and I'd much rather he didn't need so many medical appointments and blood tests. I try to accept it is what it is but my heart just wants him to be happy and not traumatised. He has blood tests and hearing tests next week

 

[wsmum]

That is a lot for poor Khaleb to deal with. Sounds like you're an awesome advocate for him though - I've read lots of your posts in my trawling round this site! William has had lymphoedema (LE) from the hips down from birth (his lymphatics are malformed so his left leg in particular is swollen and rather fibrotic), but this growth in his bone is something new - and unrelated we think - that coincided with the T1. There was so much going on at once that docs thought he had a deep leg infection and he was treated for weeks with IV antibiotics - but it turned out to be something else entirely! The LE and diabetes are not great companions because he is restricted for injection sites (v.skinny and only able to use his tummy at the moment), and of course there's the increased risk of foot problems, ulcers and so on. The good news is that William is having a strong honeymoon right now, on 7 units of lantus at night and a ratio of 1:40 for meals (using novorapid). On Saturday we are meeting up with a friend of my nephew who is at university not far from here, T1 from the age of 10, and keen to meet William to pass on some tips and positive thinking! W has had a great attitude so far thankfully, despite constant medical issues since late February. He has a CT scan on Monday so things should start moving from there.
Bye for now, Catherine