any opticians/optometrists/orthoptists? toddler with damaged cornea

[MamaLaMoo]

Hi,

My DD is nearly 3 and has just been discharged from hospital after 2 weeks after a massive infection in her right eye (caused by being poked with the sharp tip of a plant leaf) perforated the eye just below the central axis of vision through the cornea. She has had an amniotic membrane graft last week and the inflammation is reducing steadily.

We know her eyesight is permanently damaged. The docs have said vision in children continues to develop until they are 7yo or so and that her vision will be trying to develop while she has this injury to contend with.

I would like some idea of what sort of problems she may have (docs not talking about the long term yet) and if there are any books you could recommend or resources available on the web which my husband and I could read up on. We would like to get to grips with the jargon and familiarise ourselves with normal vision development in kids. We are both scientists (physics) and could easily understand the optics side of it.

Thanks very much

I'm afraid I don't think I can be of much help, but I'm so sorry to hear about your DD. It must be a very worrying time for you at the moment. I'm glad she has been discharged from hospital and I hope she improves steadily.

There are a couple of charities (apologies in advance if you're already familiar with them) that offer support and advice for families and children contending with vision problems. One of them is called Look and the other is called Vision Aid (the latter's website is under construction, but they have a number to call in the meantime). Hopefully they will be able to point you towards some useful resources, as well as offer support generally.

I feel sure your DD will flourish with such dedicated parents behind her.

Sorry to hear about your DD, fungal keratitis can be really horrible.
The docs are probably referring to the fact that because she has scarring to her cornea less light will be able to enter the eye and therefore there will be less stimulation of the visual sytem. Since the visual system require stimulation to develop properly, her eye will become amblyopic (or lazy)
This www.eyecare-information-service.org.uk/disorders/amblyopia.html is a good article.
Many people have a lazy eye and although it makes watching 3D films difficult, it has little impact on their day to day lives.

My 3yr old DD2 has several things wrong with her eyes including limbal stem cell failure and scarring to her right cornea. Was it a limbal stem cell graft your DD had and if so did they take healthy stem cells from her good eye? A stem cell graft isn't an option right now for my DD2 as the LSCF is bi-lateral and it would mean taking LSC's from myself and medicating with anti-rejection drugs. There have been advances in talking epithelial cells from inside the mouth and using those instead, thus not needing anti rejection drugs but again this isn't an option right now.

The scarring to my DD2's cornea was caused by poking herself in the eye with a paintbrush at Nursery when she was about 14mths and because of the stem cell failure, the cornea couldn't repair and thus scarred over. My DD2's eye is amblyopic, the vision is very poor and because of the scarring and other things wrong with her eyes patching isn't an option.

If your DD's scarring is small and below the central field of vision patching may well be an option? Unfortunately my DD's scarring is large and right across the center of her eye.

As far as I know, the connections between the eye and the brain are made within the first 5-8 years of life. Your brain 'learns' how to 'see' within that time. If one eye is damaged or the vision for what ever reason is poorer in one eye than the other the brain favours the better eye and the poorer eye becomes amblyopic or not used. My daughter's eye wanders off and she has little control over it. Patching is used to force the brain to use the poorer eye. I'm not sure of the statistics but success rates fall the older the child gets as the pathways between the eye and the brain become set.

As far as I can tell from my desperate research every child's case is different, the outcome and treatments vary from child to child even if they have the same condition.

My advice would be to ask for an appointment with your DD's doctor to go over some questions you have. My DD2's doctor suggested this and we found it a massive help. We found out about our DD2's eye problems almost by accident, the scarring was originally thought to be loose skin and DD2 had been taken into surgery with the intention of fixing it and it wasn't till she was asleep and they got a better look that they found the skin was actually scarring and the other classic signs of LSCF (corneal vascularisation/epithelial irregularities etc.) and that her retinas are underdeveloped (she's also long sighted one eye, short sighted the other). DD2's doctor obviously broke the news that day but then wrote to us to explain again what he had found, he then called us a few days later and offered us an opportunity to come in and discuss after one of his clinics. I wrote down all the questions I had and we spent a good 2 hours going over everything! We see an adults cornea specialist now and if I don't understand something he always spends the time to go over and over till I do. Don't be afraid to ask questions and say if you don't understand!

Wishing your DD a very speedy recovery, poor little thing

Thank you all for your replies and kind thoughts. Karoleann and Noodlesmam your explanations of lazy eye were very helpful.

My DD is now out of hospital and her eye is healing well, the ulcer is becoming more transparent and the surface layer of her eye is growing back. She is getting protective glasses to wear short term, spoke to the hospital optician who said we must wait a few months to see the full extent of the healing before they can assess what to do to correct any vision problems. I think she is going to have the most difficulty in the south-west position of her right eye as she looks out of it, which will be ok for most situations but will be a problem when reading a book in front of her :(

Would a corneal graft be of any use to your DD? In the future of course when the extent of the damage is clear.

deeplydepressed the ophthalmologists are not keen on corneal grafts in toddlers as they reject them a lot more than adults, failure rate is 50% which is why they did an amniotic membrane transplant, the tissue is immunologically very inert.

mama Really glad your DD is doing well x

It's not something that would be an option now but have you heard of collagen corneas? www.ndtv.com/article/world/artificial-cornea-made-of-human-collagen-59284 I found this article very promising, again not an option for my DD2 unless they can fix the stem cell failure and it probably wont be available for may years but still gives me some hope.