UK Keratoconus Self-Help and Support Association

My son is 16 and has a severe learning disability, he is without speech and unable to sign. He has just been diagnosed with this condition. He needs a cornea graft but because of his numerous difficulties this isn't really an option, so it has been decided not to go down this route. Can anyone give me any tips that will help with the constant irritation that seems to be a hundred times worse when he is trying to sleep. He had a general anaesthetic to give him steroids three weeks ago but now I have been given ointment to try and get into is eyes myself. My son only has the developmetal age of a baby so the normal things like explanation of whats happening or good old bribary are not an option.
My sons specialist tol me that pain killers don't work for this condition. Is this correct or does anyone know differently?
I'm completly at a loss what to do to help my son who is suffering and would love some help from people who know.


ps
I've just posted some questions but forgot to say that my son does not wear glasses as due to his learning disability he is not able to tolerate glasses.

I am so sorry to hear about your son's condition.

If he has pain due to keratoconus that is probably due to light being scattered onto parts of the inner eye that were not intended to be struck by light. It is true that painkillers do not work, and given that your son cannot wear glasses the strategy adopted by many of us of wearing sunglasses seems not to be an option. Hydrops (a different eye condition but sometimes associated with KC) can also be painful, as can corneal abrasions. I guess your son does not have Hydrops and abrasions are usually associated with contact lens wear.

That said, Keratoconus is not, of itself, a painful condition. When we do get sore eyes there are sometimes anesthetic drops that bring relief, but these sting when they are first inserted and if your son learns to associate the arrival of eyedrops with stinging eyes, it may become difficult to administer other, more benign drops.

There is a mother in much the same position as you who posts sometimes, and she may have some advice to share. Otherwise, be assured that you have our heartfelt sympathy.

Andrew

Andrew

Just to add that there is a very useful source of information about keratoconus and learning difficulties at www.lookupinfo.org The website also gives a helpline number. I'm pretty sure that the mother Andrew is referring to contacted them as well as us and had some very helpful advice. All the best
Anne

depending on what is causing the sore, irritated eyes I find a cold facecloth across the eyes soothing (others i believe find warm compresses soothing). this helps me when i am going to sleep and my eyes wont stop itching etc - it also blocks/dims the light getting to the eyes. I believe that you can get some facemasks (some with elastic to put around the head like this http://www.amazon.co.uk/ACTIVE-COOLING- ... =pd_cp_d_1), some can be warmed, others cooled this may help and could be something for you try, rather than trying to put eyedrops in his eyes each night.
Obviously this being successful will dependant on how coperative your son wants to be (and I realise that on occasions this is unlikely due to his other disabilities). But it may be an option to try on occasions instead of the drops.

Thanks everyone for really quick replys.
Some good advice and helpful suggestions, really appreciated.

Hi Everyone, David does infact have hydrops (a fact I had forgotten until I saw it in your reply).
I have just read an article by some parents who took an holistic approach to helping their sons condition. Is this something the group know anything about? As you can tell I'm still very new to this and clutching at straws.
I'm not even sure what his condition is called. Is it "Keratoconus with hydrops" or Hydrops with Keratoconus". I'm quite aware that I must sound mad asking your group these questions and not his consultant. Years of coping with my sons other disabilties 1. Downs Syndrome
2. Severe Autism
3. Severe Self Harm (which I now realise may have been this condition starting)
4. Challenging Behaviour
Have trained me to ask questions until I'm blue in the face but I'm out of practice with new ones!!

I've just looked at the www.lookupinfo.org and found it very helpful. The more I read the more convinced I am that his Self Harming which started in 2002 could have been a result of this condition starting. My son has been on very strong drugs for 8 years to stop him self harming and I'm horrified to think that it may have been the start of this condition. This condition is common in people with Downs Syndrome so surely it would make sense for these kids to be called for regular checks, even challenging ones lke my son. It seems so sad that so many people with profound learning disability could be suffering from this condition simply because they can't tell anyone how they're feeling.
Sorry for the ranting.

Hydrops affects about 2% of people with KC (though again I believe it's more common in people who have Downs syndrome). It can be very painful, especially when it first happens, although the good news is that it does eventually heal although this can take some months. You'll find a useful article about hydrops and KC on the home page of this site
keratoconus-group.org.uk/sitev3/features.html
I do hope the pain will be over soon for your son. And you're right - eye problems in people with learning difficulties were a very neglected area, though things are improving with organisations like RNIB and Seeability doing a lot of campaigning and producing a lot of useful information to help practitioners diagnose eye problems even for people who can't communicate. But there's still a long way to go.
Anne

Thanks very much for all advice. I found the article on KC and hydrops very interesting and helpful. David has just come in from school so I'd better go and feed and water him or we'll all be in trouble!!!!!! Thanks again.

Hi, I'm so sorry to hear of your son's problems. My experience is similar to yours only your son seems to have more challenging behaviour than my daughter, Jennifer. She also has no speech and the ability of about a 12 month old so explainations are difficult. I always tell her what is happening just in case she understands more than I think. My posts are under "Disabled daughter and Keratoconus" if you want to check out my story and see if has any relevance to you and yours.

Jen (31) was diagnosed with KC after suffering from acute hydrops on Christmas eve. She had been miserable for about 2 1/2 years - bascially wouldn't open her eyes. We even had her checked out at our local hospital in May last year and KC wasn't diagnosed. For the first 6 days after suffering from hydrops I just sat and slept with her to try and stop her from rubbing her eyes. Once the hydrops settled down (about 6 weeks) and her regime of drops every 2 hours started she is a lot happier. She still has a corneal scar but her specialist believes it will continue to improve over the next few months.

She still hates getting the drops administered but she now has her eyes open about 80% of the time compared with about 10% of a few months ago. We also now have her wearing sunglasses while outside or in the car. It took a lot of perserverance from us all to achieve this, so don't give up on trying with your son. We found starting her with just a few seconds at a time (with lolly bribes) to encourage her... Once she realized (we think) that her eyes felt better wearing the sunglasses she will now keep them on for quite a while. We also used lolly bribes for the eye drops - especially the ones treating the hydrops as they were painful when they went in. She doesn't get lollies now when we do her drops - just a cuddle and lots of praise. She has a thick lubricating ointment for night time which helps keep her comfortable.

I know that KC isn't supposed to be painful but Jen's Dr has prescribed her paracetamol morning and night. It does seem to make a difference to her - especially at night. If I forget to give her her pain relief she doesn't settle and I'm usually up in the early hours with her pills. She's then usually asleep within 1/2 an hour or so. Since she can't tell us if she's in pain we can only go on her response to the meds.

Yes, corneal transplants aren't an option for kids like ours which is a shame. I found that getting as informed as I can helps - as is this forum and the comments posted by all these wonderful people. Through them we get a glimpse into our children's suffering.

Take care - my heart goes out to you and your son. It will get easier once the shock wears off and then KC becomes just another challenge we have to conquer in support of our special children
Carleen