Diabetic eye screening result

[jackgard]

Hi, my daughter is 16 been T1 for 2 years. She refuses to test blood sugars, it's probably been 4 months since she tested. She also refuses to attend clinic appointments. Recent results from eye screening say that she has slight early Diabetic changes. I am now panicking, tried talking to her about importance of blood testing but I may aswell be talking to the wall. She just won't take it on board. Any advice gratefully appreciated

Jackie
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[noblehead]

Re: Diabetic eye screening result

Difficult one Jackie as I would normally suggest that their diabetes team intervene and have a firm word, as your daughter won't attend the clinic this would be difficult unless they ring her at home.

Early changes in the eye can be halted in their tracks if good blood glucose control is achieved (although there's no guarantees) and she certainly does not want this to develop any further, if you can get her to look at the following site which details all about Diabetic Retinopathy and the different stages of development and treatments, hopefully this will be enough to make take her diabetes seriously:

http://medweb.bham.ac.uk/easdec/
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Good luck!

 

[the_anticarb]

Re: Diabetic eye screening result

Ask her to walk around for a few hours with a net stocking over her eyes, this is what it felt like to me when I had my bleed, I could still see but it was like looking through cobwebs or netting. It was really annoying, I just wanted to brush it away but of course I couldn't as it was inside my eyes.

Unfortunately if she doesn't want to listen, there's not a lot you can do, she will probably have another few years of getting away with the background retinopathy, but the journey from background to full blown retinopathy can be a short one, and it can get worse before it gets better as once you try and control your blood sugars it takes up to 3 years for the retinopathy to settle down (if it is full blown) which can be very frustrating when your eye condition is getting worse and there's nothing you can do about it.

Good luck.

 

[Yorksman]

Re: Diabetic eye screening result

She probably needs to talk to someone her own age who has had the problem. Is there a support group nearby who will know someone? At that age, they tend to only listen to their peers. Some hospitals also have specialist units who deal with teenagers, self harming, refusing treatment etc, and they seem to be good at getting through, primaily because the conversations are confidential. You could ask your local hospital if they have such a unit. Often they are not even situated on the main site. They may at least know of people who would be useful. Young girls especially can be quite stubborn so it is not an unusual problem.

 

[the_anticarb]

Re: Diabetic eye screening result

Problem is, yorksman it takes on average 20 years for retinopathy to develop to the serious level. I doubt there are many teens with proliferative retinopathy.

 

[Yorksman]

Re: Diabetic eye screening result

Problem is, yorksman it takes on average 20 years for retinopathy to develop to the serious level. I doubt there are many teens with proliferative retinopathy.

What's all this 20 years? According to jackgard, the problem is that she refuses to test blood and won't attend clinics. As noblehead has summarised, she needs to 'take her diabetes seriously'. She needs to do that first, to avoid problems in the future and I am quite certain that she is not the only teenager to wish the problem would go away. There are others however who do respond and it would probably be a good idea for her to be in touch with them.

If her parents cannot get her to attend clinics, I think they will encounter stiff resistance to any suggestion that she walks around with a stocking on her head and I don't think your advice that 'there is not a lot you can do' is very helpful either. Jackgard has specifically made a post asking for suggestions. Trying to put her in touch with teenagers around her age who also have diabetes may help assuage any anxieties that she has about attending clincs or testing glucose levels. Teenagers want to belong to a group of their peers and not of their parents' generation. The need to belong is great and the idea of being separate is an anathema. She probably needs to talk to other teenagers who have diabetes in order that she can relate to people of her own age who also have the same disease. With that should come acceptance and a more responsive attitude to doing something about it. At the moment she is probably just trying to deny it.

 

[jackgard]

Re: Diabetic eye screening result

Thank you all for replying. The hospital does have teenage clinics she is due to transfer over soon, she has appointment next month to meet the new team but I am not holding out much hope that she will go. I have also tried encouraging her to join this Forum so she can talk to people her own age but at the moment she doesn't want to. I suppose all I can do is be here for her and hope she will accept what she needs to do soon.
Jackie

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[Sue_c]

Hi Jackie

I've had the same experience - they have to see it for themselves and for us there was a lightbulb moment when my daughter's diabetes stopped being mine and became hers - our trigger was a 13+ HBA1C.

At 16 they want to be like all their friends and getting her to stop and test her blood at school and inject was an impossibility. She'd either inject and not test or just do nothing at all. It didn't matter how much I shouted, threatened (what the outcomes of poor control could be - not my proudest moment) bribed or cried. It's like anything - if you don't want to change it for yourself then you won't - and teenagers think they are invincible). For your daughter especially diagnosis at 14 would have had a massive impact as all of a sudden so much must have changed. Mine was diagnosed at 9 and us now 17 but it's not the length of time diagnosed - its just the stage if their life that they're in as several others have said.

She has recently done a DAFNE course - that helped a bit, and in August she is going on a Diabetes UK holiday. Both may be worth following up - spending time with other diabetics has always been if benefit to her - even if only temporarily and I am hoping she will come home in August with a host of new friends that she'll stay in contact with to extend the effect if the holiday.

We've turned a corner but there's still a long way to go - her HBA1C is still over 10 but at least she has made some inroads.

Sue


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[jackgard]

Re: Diabetic eye screening result

Thanks Sue, I am hopeful this will pass, unfortunately she won't have blood test so not sure what her HBA1C is for now. 5 months ago I think it was around 9. The Dafne course isn't something offered in the Highlands, I have read a bit about it and it sounds good. Thanks for all the support it all helps
Jackie

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[garythegob]

Re: Diabetic eye screening result

Hi Jackie, your daughter needs to take it serious, ask her what she will feel like if she needs to have a leg amputated, loses the sight in 1 or both eyes, loses the use of her fingers, ALL OF THESE ARE POSSIBLE, i have a cousin who is type 1, blind in 1 eye, rapidly losing the sight in his other eye, and an uncle who had his left leg amputated below the knee! I myself had a heart attack beginning of February this year, and i am type 2, I NEVER HAD THE CUSTOMARY PAIN IN LEFT ARM OR ANYTHING, I JUST COLLAPSED AFTER USING THE TOILET AT 1.30am ON THE 1ST FEBRUARY, stood up after using the toilet, and went face down into the bathroom floor

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[jackgard]

Re: Diabetic eye screening result

It's all very well saying she needs to take it seriously but she is a teenager, have you tried getting through to a teenager. I put this post up for some advice, really don't need to be told about losing limbs etc. Thanks anyway

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[hanadr]

Re: Diabetic eye screening result

Jackgaurd
You've said it.
Teen agers are difficult. scaring them doesn't work. They KNOW they are immortal.
Getting her in touch with other teen age diabetics is your best bet I think. Look on the Diabets UK website and unt for their services for kids. There are lots like the DUK holiday already mentioned.
Also I like the idea of handing the responsibility over to her. Other kids her age are in the process of becoming more independent.
Perhaps you could get help and advice from the DUK website, which you can all participate in equally?
Hana

 

[LisaR]

Re: Diabetic eye screening result

Jackie,
I really, really sympathise with you. I sometimes feel like she does, even though I'm at the other end of the hormonal spectrum (I'm 48!), and was only diagnosed with type 1 in October. I also have two teenage daughters and know that 'normal' life for them can be very confusing and complicated.
I don't have very much experience and really don't want to make light of this but having ploughed through some of Richard Bernsteins book, The Diabetes Solution, he managed to reverse most of his symptoms through good control and diet. It is extreme but it may also be possible. I'm sure she'll come around, she's entitled to rebel against it, I certainly wish I could, but my conscience kicks in so I just rant like a mad woman, it seems to help till the next time, ha ha!
Good luck with this, one day she'll thank you for being so concerned, although it may not be yet!


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[glenmoray]

Re: Diabetic eye screening result

One thing, she is still having her eye screen tests. I've been diabetic for 34 years and use to be like your daughter. I've had to have 2 episodes of laser to both of my eyes. As long as she keeps attending the eye clinic any changes will be picked up and dealt with. In time she will realise keeping her sugar levels is important and looking after herself pays off.


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[the_anticarb]

Re: Diabetic eye screening result

All I am saying is, I was where your daughter was 20 years ago. I didn't test my sugars and just pretended I didn't have diabetes, basically. My parents vitually gave up in the end as no matter how many times they told me that there would be prblems in the future I did not listen. There was nothing they could do, no one could save me but myself. It does take on average 20 years for retinopathy to develop to a proliferative stage - this is what the consultant told me. Of course, with poor control this can be sooner, I think around 14 years. So there are relatively few young diabetics with proliferative diabetic retinopathy.These are medical facts, not opinion. The fact that it takes so long for the damage to happen lulls many diabetics in to a false sense of security as they think they are immune to the damage.

Sadly for me it took until I had one eye bleeding and in serious danger of going blind before I was able to take responsibility. I sincerely hope this is not the case for your daughter, but at the end of the day you can't do it for her - she has to learn to do it for herself.

 

[czj]

Re: Diabetic eye screening result

Hi. There are probably many people here like me, who were diabetic for at least 20 years before blood testing was introduced. o blood testing itself isn't the answer to doing well. We managed, by gauging how we felt and adjusting our insulin and food accordingly. And as for clinic visits as a teenager - well my most enjoyable bit was forging 6 months worth of urine test results the night before.

(I know there is a bit of survivor bias there - i.e. I am fine but probably not everyone who was diagnosed the same year as me is here to tell the tale.)

Anyway, perhaps your daughter has a pretty accurate view of how her blood is doing, even if she doesn't always act on it. I try even now I try to keep my skills up (for the day the NHS decides it can no longer fund strips - relying on strips made from unicorn horn was a bad decision.) Each time I test my blood I guess what the result will be - and I am devastated if I am more than a few points out. How about trying this with your daughter? If she is close to the meter readings it could help her confidence.