keratoconus and autism

[trac jane]

I have a 20 year old son with keratoconus and autism. He needs a trial with contact lenses but is only given a normal 10 min appointment and is not understanding and frightened. Is there any help available?

[Andrew MacLean]

Hello and welcome to the forum. I have moved your post to the General Discussion Forum, where it is likely to attract more responses.

Your son is not alone, and I am sure that he will not be the first person with both autism and keratoconus whom the optometrist will have fitted with a lens. Just phone ahead and explain that your son also lives with autism and the optometrist ought to be able to make adjustments both to the duration of the appointment and to the approach to your son that will take into account the extra burden he carries.

Is the optometrist in a hospital contact lens clinic, or in the private sector?

All the best

Andrew

[trac jane]

thank you for your reply i am taking him to a nhs doctor who says at his age if he does want a lens fitted its his choice. He doesnt understand and has lost sight in one eye already but the doctors just say when he cant see he will b glad to accept help. The other eye tho has deteriorated beyond help and im worried the other will do same without someone to coach him into accepting contact lenses may help him. His local optician says i would have to pay private for soft lenses and her help which i cant fund ...im absolutely lost where to get help

[Andrew MacLean]

First thing to do is take a deep breath.

I presume that your son has an NHS ophthalmologist (eye specialist). Is your ophthalmologist a cornea specialist? If not I'd ask for a referral to another hospital where there are people whose attention is more focused on the cornea and things that can go wrong with it.

You are entitled also to consult an NHS contact lens specialist. In Glasgow we are very well served by a first class KC service, and I know that this is the case in other large population centres, although I also know that things are not so good in smaller centres and in rural areas.

Tell your son that there are lots of different sorts of lens and that there may be one that is right for him.

Every good wish.

Andrew

[Lizb]

Where are you based and are you attending a more specialist NHS eye clinic, for example Moorfields in London/Manchester Eye Hospital/Birmingham Eye Hospital or are you under a more local nhs hospital? I ask as i am under a more local nhs hospital who dont really get how KC affects my life etc, however that is my choice and i understand the limitations of using this hospital. I am lucky in that my CL fitter is very understanding, and all her CL sessions are a minimum of 20 minutes for all KC sufferers and she spends as much time as needed trying to find suitable fits/lenses. I am also lucky as i have good vision (very early stages of KC) in one eye so i can still get by with glasses for that eye.
If your son isnt under someone who specialises/knows and understands KC, and the implications but who also understands something about autism then i would look at getting a second opinion/referal to a more specialist eye clinic, and make sure that they understand how your son's autism works.

[trac jane]

Hi my son is under a local hospital in northamptonshire. I have no idea where to go i have asked the consultants advice on where i can get a lens specialist to try and help him. He just offers the hard lens but my son had 10 min appointment and a doctor saying stick this in ...to which now he just refuses to try . When i asked if there was anywhere i could get help he replied if he got lens in it probably wouldnt suit him and is painful and can cause infections if not cleaned properly so we shall wait until hes ready for surgery. The local optician rejects the idea of surgery but says his good eye will only hold for another 5yrs at the maximum without a lens . But the progress in the eye he has lost total vision was fast and i am worried the progression in the other eye without a lens in will happen before i can get to find support with him trying to fit one

[Andrew MacLean]

Ask for a referral to your nearest cornea specialist.

it is true that for many people with keratoconus, the rigid gas permeable lens is the first line tried by optometrists. I guess that there are thousands of people with KC for whom this is a comfortable and trouble free approach. For some, and it seems for your son, the rgp lens is not at all suitable. There are, however, other lenses that can be tried, and that are available on the NHS. There is the scleral, there are hybrids and there are new soft lenses like the kerasoft 3.

All the best

Andrew

[Anne Klepacz]

Depending on where you live, there are 3 possible hospitals which all have large contact lens clinics - Leicester, Coventry and Oxford. You could ask your GP to refer your son to one of those and hopefully get a bit more help with contact lenses for him. And if you e-mail me, anne@keratoconus-group.org.uk we have various information we can send you.
Anne

[GarethB]

Hi Trac Jane,

I go to the hospital Anne mentions in Coventry and I know they have treated people with learning dificulties which Autism is sometimes classed as (although knowing several autistic children they are extremely inteligent). Coventry are aware of soft lenses as they have been monitoring me during my trilas of the Kerasoft IC lens which was launched recently and they did say they would supply the lenses once the trial was complete which is now is. So come February, I will be getting them to order a set.

As Anne says, you can ask your GP to be refered to Walsgrave in Coventry (Just off the M69) so easily reached from Northampton or a short bus ride if you get the train. The optometrists are excellent and I rearely have a 10 minute appointment.

Perhaps it would be useful for you and your son to chat with someone who wears contact lenses on a more 1:1 basis at your pace?

My contact details are at the bottom of my signature and I am quite happy to speak with you over the phone and if you wnat meet you and your son in person.

Regards

Gareth

[trac jane]

anne and gareth thank you soooooooooo much looks like coventry here we come if can get doctors assistance! This group is a god send your angels!