Any advice for mother of 12 year old...please

[DottyD]

Hi Andrew,

Yes it was the hospital's optometrist.
It was funny in that she must of called me the instant my husband and son left her office. She said that they hadn't succeeded in getting the lens in and that my husband had decided to leave it for 6 months... not quite the whole truth.

I'm going to give the hospial a call tomorrow and just ask who else we can see. We've only see the Ophthalmologist once and I can't even remember his name... so more informaiton I need to find out.

[rosemary johnson]

Hi Dotty
I agree with Andrew - this isn't the osrt of relationship with any health care professional you want - and a second opinion does sound in order.
Good luch with the hospital.
I'd be usrprised if there sin't anyone else in Swindon who knows about KC.
But if there really isn't, would it be possible to get to, for example, Oxford? - who do have a good eye centre and people who know about KC and fitting lenses to people with KC.
Best wishes with it all - I'm not srprised that Zach is not happy with all this!
Rosemary

[clare f]

hmm that doesnt sound helpful what so ever, i dont think thats acceptable the way she was, maybe it is best to ask around or even try different areas to find some one else, at the end of the day you have to have a good relationship with them to fully gain the benefit. your son should have her full attention and not be rushed i know when i go if i need to talk for hours about my eyes my contact lens lady is more than willing to listen, i have been with her now for 6years. i hate to say it but have you thought of looking privately for someone with this you get a lot more attention, and they will usually then refer you back to their nhs list after an initial consultation, so you dont even have to pay all the time, you just find the right consultant that you want.just something to think about.
keep us updated on whats happening, good luck x

[DottyD]

Hi Andrew,

Yes this was a hospital optometrist. I don't think she intended any harm but just lacks the patience needed for Zach.

I have called the hospital today and am expecting a call-back early next week. I've told them I want to speak to someone who can give us ALL the options and not just those available in Swindon. I was also told that they have a new optometrist starting in Oct who will be at the hospital all week and not just one day - which has to be better.

At the moment I need to get as much information as possible so we can decide on what to do/where to go next.

Dawn

[DottyD]

Sorry Rosemary and Clare,

I missed your posts first time round.

As you'll see from my reply to Andrew I am awaiting a call-back from the hospital and will see what they say. I'm also going to have my friend speak to the consultant in Bath (she's an eye nurse on his ward) and ask about other options.

He has already said he would be happy to see us so we may sort this out. At the moment I just need to get as much information as I can so we can decide on the best place for us.

Luckily the experience hasn't totally put Zach off and he's really keen to get lens'- especially as he's been told, by his teacher, that he needs to wear his glasses - he's only short so gets teased enough he certainly doesn't want to give anyone any more reason to tease him!

[rosemary johnson]

SOunds like you're heading in the right direction, Dawn.
All the best with it - hope the hospital do indeed get back to you and come upwith something sensible.
DO keep us posted.
Rosemary

[GarethB]

Only once has an optom suggested I was lying about how well I could see. Then I pointed out that I have had KC for 20 years, its usualy a slow progressive condition and the brain is quite clever in the way it adapts.

For example I know a Sky digital tv satelite dish is black, but put it on a bungalow it is the same height as a post office sign, it's the same shape and without lenses it turns red! My brain has been conditioned to interpret that shaped blur as a post office sign. See the same shape a bit higher and it suddenly turns black!

The brain see's images blured or otherwise and interprets it as best it can, often based on prior knowledge.

We often see floaty bits in our eyes and some see the images as spiders crawling everywhere, I just see them as brown dots but only when I don't have lenses.