David's Eyes are getting worse

[oracle]

I had a really bad day yesterday and I am only just feeling OK enough to post now. David went for the first real fitting of his lenses for his Keratoconus (KC) For the third time in a row we seen someone who was unaware that as well as the KC David also has AS I once again asked if this was not written into his notes? Turns out that it is written on page 3 but in very small writing. Sorry but his AS is a very big issue here and is most certainly impacting on the KC.

 

As it happens the Optometrist was excellent and once she was aware she did take her time. H. It turns out that the KC has now moved into his left eye and so that is also going to have to be closely monitored. We have also waited 10 weeks for a fitting for the lenses and during that time the KC in his right eye has progressed, and so the lens was actually no darn good Which means that they had to start again and then we wait again. I did say that I was not going to wait another ten weeks and the Optometrist agreed and said that this was now high priority and that she would mark it down as such. But sadly there is a HUGE waiting list and not enough staff to go round

 

The one high spot of the day was the fact that for the first time ever David had written down a list of questions of his own that he wanted to ask. He always leaves it to me to ask what is necessary but he has realised that he has to have some level of awareness of what the KC is going to mean to him and impact on his life. He had written 15 questions and each one was answered with care and a high level of patience for which I was grateful. I really had a lump in my throat because boy has this been a long time coming. David has made so much progress in so many areas that I feel that the KC is so totally unfair and it's making me as mad as hell How much is one person meant to cope with here?

 

From the second the lenses went into both eyes his eyes went as red as tomato ketchup which lead to the comment of 'his eyes are really hyper sensitive' Which is why the word 'autism' really needs to be high lighted on the front page of his notes. Even with the anaesthetic his eyes ran like taps and after ten minutes the Optometrist gave up and took the lenses out. I really do fear that he is never going to mange these and then he will almost certainly need a cornea transplant which last for around 10 years, which means that that is not a long term answer either.

 

I have no idea where we go from here if it all fails to work out - but I have already forewarned his Dad that whatever it may cost to at least save the sight in one of his eyes it will be found from somewhere.

 

Oracle

Edited April 14, 2006 by oracle

[Brook]

Oracle & David,

 

Sorry all I can offer is a listening ear and some of these. <'> <'> <'>

 

Brook

[asereht]

Oracle <'> <'>

Edited April 14, 2006 by asereht

[phasmid]

All I can say is that you are all in my thoughts. <'>

[mossgrove]

<'> <'> <'>

 

Thinking of you, this must be a very difficult time.

 

Simon

[Guest hallyscomet]

Carole, <'>

 

Sending you lots of these, <'> <'> <'> <'> will PM you

 

Hailey

Edited April 15, 2006 by hallyscomet

[Suze]

oh Carole........how is David was he in a lot of discomfort with the lenses??........I hope you can get something sorted soon and you don,t have to wait too long for another appointment <'> .take care Suzex

[Flora]

Carole

 

Oh god if it's now one thing it's another isn't it? I really hope that he can get used to the lenses and that the transplant won't be necessary.

 

<'> for you and David.

 

Lauren XX

[Tez]

<'> <'> <'> for you and David. Hope a solution to the lenses is found.

[annie]

<'> Carole and David <'>

 

I am thinking of you both .

 

Well done to David for writing down his questions .

 

Annie

xx

[oracle]

Thanks Guys

 

I am 'trying' to be open minded and positive. I have to be because David only feeds of negativity and I don't want that. I am finding him quite amazing at the moment because he appears to be taking this in his stride, as much as anyone with AS can. He even asked if he is allowed to go swimming at the moment because he is also trying to lose weight and wants to go swimming with his eldest brother. You can even get prescription goggles for KC David was trilled - maybe he feels that he got to grips with the AS and so he's going to do the same with this? I hope so.

 

I have now had a really good talk with his Dad and spelt it out in big block capitals that this could have as big an impact as the AS. He never really accepted the AS bit but as he can 'see' that David has something wrong with his eyes he is actually listening to me.

 

The only person I know who understands the importance of the autism and the impact it's already having on his KC is Ian and thankfully he mailed me today telling me to ring him - which I will but it is Easter and he has a family. However it is good to know that he and you are all there for me.

 

<'> thanks

 

Carole

[justamom]

Your David sounds wonderful and i am glad that he is "taking things in his stride"...

 

I wish you guys all the best Carole, be strong!!! <'>

 

Justamom

[Suze]

Hi Carole, have you looked into the possibility of laser eye treatment......is this possible for the condition, would David consider it.Bit of a tricky one laser eye treatment ........my father in law had it and sings it,s praises, but he,s not ASD .If it were my son don,t think he,d like it either, although a cornea transplant is a scary thought too.Wish there was some magic medicine. <'>

[bid]

Oh Carole

 

Thinking of you all <'>

 

Bidxx

[oracle]

Laser treatment was the first thing that we thought of when David was diagnosed but the optician told us that this is not an option with KC and the eye hospital confirmed this.

 

It's like putting the clock back to when the two boys were diagnosed with ASD - boy was that a learning curve - and one thing I did learn is that you do not learn it all over night. I have joined the KC forum, like this forum it's probably the best place to learn. They are all very nice with loads of knowledge. The only problem is that although they all have KC none of them have autism as well - and I do believe that the AS is making it's mark alongside the KC.

 

Carole

[CarerQuie]

((((((Carole and David))))))xx

[nellie]

Oh Carole

 

My thoughts are with you and yours.

 

Nellie <'> <'>

[Guest flutter]

(((hugs))

my thought are with you just now

C xxxxx

[LKS]

Carole and David <'> <'> Thinking of you as well.

[smiley]

Oh hun... <'>

 

Thinking of you and David xxxxx