Lazy eye / double vision

[Danlos166]

We are knew to this site. My daughter has hEDS. She started with symptoms last year so far she has had trouble with joints , fatigue, not sleeping , migraines, bowel problems and she constantly feels sick. She had eye squint surgery at age 3 and then wore an eye patch A while after that she complained of double vision. She was given prisms and varifocal glasses to try and help. In the end she just managed to ignore it. She been so ill for the last year and 3 weeks ago she said her double vision is now constant it doesn’t go away and she sees 2 of everything all the time. We have been referred to the eye clinic at the hospital and we are waiting to hear back from the neurologist. Has anyone experienced this ? Is it related to her illness or just a coincidence. Does anyone know? Thank you

[Jay66]

Hi,

eye problems are caused by hEDS, although there is an outside chance that they are coincidental. If you look at this link: totaleyecare.com/ocular-com...

there are lots of problems caused by weakness in the collagen which makes up and supports the eye. There are 3 other sub-types of EDS which cause eye issues, but your daughter will not have them as they are straightforward to diagnose.

It sounds like your daughter has gone from the 'hypermobility phase' (where that is your only symptom) to the 'pain phase' last year, and it sounds like she has transitioned quickly, so it is not surprising that she is constantly feeling sick etc. Over time, she will work out how to manage the condition better - maybe with a different diet, scheduling breaks during the day and so on. I feel sick every morning - as long as I take pain killers it goes away by my second coffee.

It will also have come as a real shock to the psyche. Suddenly, the future she thought she was getting has been ripped away, and the present is different to what she thought. It can take quite a while to get over that blow. The best way to help and support her is to find out as much as you can about hEDS so you can be her advocate. I advise you to join this ehlers-danlos.com/ and also this facebook forum: facebook.com/groups/1451508...

You may wait a long time for the neurologist depending on where in UK you are, but the eye referral should be fast.

[Danlos166 in reply to Jay66]

Thank you Jay66 I will have a read of the links you sent. 😊

[cyberbarn]

Have you tried going to a behavioural optometrist? They can assess problems like this and provide exercises to help the eyes work better together. My son had a lot of focus and tracking problems and after doing the exercises for 6 months his eyes were working together properly. I had a friend whose son had a lazy eye and the normal opticians weren't going to do anything about it so she went to a BABO registered optometrist and again her son was able to correct his vision without surgery. It might be worth a try.

babo.co.uk

[Danlos166 in reply to cyberbarn]

I’ve found an optometrist in York who offers behavioural vision. I will give them a call to see if they can help. Thank you. I didn’t know anything like this existed it will be wonderful if it works for my daughter. 😀😀

[cyberbarn in reply to Danlos166]

The one in York is the one that my friend used and she was pleased with them. Good luck!

[Danlos166 in reply to cyberbarn]

Thank you 😀