Keratoconus and Disabled Daughter

General forum for the UK Keratoconus and self-help group members.

Click on the forum name, General Discussion Forum, above.

Moderators: Anne Klepacz, John Smith, Sweet

User avatar
Carleen
Contributor
Contributor
Posts: 36
Joined: Sun 24 Jan 2010 11:58 pm
Keratoconus: No, I don't suffer from KC

Keratoconus and Disabled Daughter

Postby Carleen » Fri 23 Apr 2010 10:50 am

Hi
It's been a while since I last reported on Jennifer's eyes but she finally got her exam under general anaesthesia on Monday. It was pretty traumatic for her once the trip to theatre arrived and I felt so sorry for her as she was crying and looking at me with pleading in her eyes. :cry: She didn't stop crying till she was asleep but woke up happy so that was a relief.

The specialist said her corneas were very thin - 200 nm - and very steep. He suggested we try her on glasses, -12 diopters, to see if he can improve her distance vision a bit. He said he couldn't treat the vision distortions using glasses. His hope is that she might be able to watch TV a bit easier and possibly when she is out and about she might be able to see her surroundings better. He said that if we noticed an improvement in her then he would consider doing an implant in one eye. I'm not too sure about going down this path as she has an uncorrected squint so only uses one eye anyway. I don't want her to lose what close up vision she has in her dominant eye and there would be no point in putting an implant in the eye she doesn't use.

We have resigned ourselves to managing Jennifer as she is and to just try and keep her eyes as comfortable as we can. She has developed quite red eyes in the last couple of months so I am a bit worried she could be developing an allergy to the drops. I can't use drops with preservative, so I wonder if she is going the same way. Any sugggestions / ideas?? :?

:) Carleen

User avatar
Andrew MacLean
Moderator
Moderator
Posts: 7703
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Re: Keratoconus and Disabled Daughter

Postby Andrew MacLean » Sat 24 Apr 2010 6:12 pm

Carleen

You have to be the most courageous mother; I am sure that Jennifer knows the depth of your love for her.

You have difficult decisions to make, but the implant looks like a pretty good option for Jennifer. If the glasses bring an improvement, the implant may be expected to offer the same. I know that the idea of them putting something in Jennifer's eye is hard for you, but in your place I'd be guided by the surgeons.

Every good wish.

Andrew
Andrew MacLean

User avatar
Carleen
Contributor
Contributor
Posts: 36
Joined: Sun 24 Jan 2010 11:58 pm
Keratoconus: No, I don't suffer from KC

Re: Keratoconus and Disabled Daughter

Postby Carleen » Wed 28 Apr 2010 11:40 am

Hi Andrew

I'm not so worried about the idea of an implant but the loss of her close up vision. We have a few months to think things over and observe her before Jen has another hospital visit.

Jennfier met me today (with her care giver) at the optomotrist to get fitted for glasses. First, she cried because she was in a new place and I guess was scared because of her hospital visit last week. After we calmed her down we picked out a cute pair of pink frames for her (pink is her favourite colour). She was so funny looking at herself in the mirror. :lol: When it was time to leave the clinic she started crying again as it was filling with children and I think she wanted to stay with them. She's so funny - I wish I knew what was going on in her head!!! We collect the glasses in a week so then we get to see if they make any difference to her. It will be nice if she can recognise me when I pick her up to bring her home.

:) Carleen

User avatar
space_cadet
Champion
Champion
Posts: 955
Joined: Tue 12 May 2009 11:46 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Leeds
Contact:

Re: Keratoconus and Disabled Daughter

Postby space_cadet » Thu 29 Apr 2010 4:31 am

I really hope that Jennifer benefits from her new glasses :) I thought I had already replied the otehr day with the name of the preservative free drops I use but clearly I either ran out of time or got (sorry)

I use the single vilals of Celluvisc *sp* they are the only 'wetting' drops I have managed to get on with as all the others (with preservatives) made me worse.

Lea
x
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world

User avatar
Charlottes mum
Regular contributor
Regular contributor
Posts: 139
Joined: Tue 24 Nov 2009 5:14 pm
Keratoconus: No, I don't suffer from KC
Vision: I don't have KC

Re: Keratoconus and Disabled Daughter

Postby Charlottes mum » Fri 30 Apr 2010 1:07 pm

hello carleen. charlotte uses systane lubricating eye drops. preservative free single vials by a company called alcon (hope we're ok giving brand names out) Charlotte and I send our best wishes to you and Jennifer.
"Promise me you'll always remember that you're braver than you believe, you are stronger than you seem and smarter than you think" .....Winnie the Pooh

User avatar
Carleen
Contributor
Contributor
Posts: 36
Joined: Sun 24 Jan 2010 11:58 pm
Keratoconus: No, I don't suffer from KC

Re: Keratoconus and Disabled Daughter

Postby Carleen » Mon 03 May 2010 6:39 am

Hi Guys
Thanks for the info. I've used Celluvisc myself in the days after I had my Lasic surgery and my dry eyes were causing me heaps of problems. I haven't heard of systane drops so will see if they are available in NZ. I'll get samples of both and give them a try this weekend.

I had a meeting at Jennifer's day base today and had a chat with her key person there. I asked her if they were letting her rub her eyes through out the day as I had noticed that her "bad" eye was always very red. She said that they only stopped her rubbing her eyes just after the drops went in! I explained (for about the third time) that she isn't allowed to rub her eyes at all and that they need to remind her, every time they see her rubbing them, to leave them alone. Hopefully the message got through this time. I also let her know that Jen can have her drops more often if she needs them so to use there judgement.

I can't wait till the weekend and trying out her glasses. Hopefully they turn up in time.

:) Carleen

User avatar
Andrew MacLean
Moderator
Moderator
Posts: 7703
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Re: Keratoconus and Disabled Daughter

Postby Andrew MacLean » Mon 03 May 2010 9:17 am

Carleen

one of the bespoke aspects ofkeratoconus is that an artificial tear that is perfect for some may be unsuitable for others. I use clinitas soothe, but it tooke years to discover thatot it was ideal for me.

If one sort offtop proves unsuitable, keep looking.

Andrew
Andrew MacLean

User avatar
Carleen
Contributor
Contributor
Posts: 36
Joined: Sun 24 Jan 2010 11:58 pm
Keratoconus: No, I don't suffer from KC

Re: Keratoconus and Disabled Daughter

Postby Carleen » Tue 04 May 2010 5:55 am

Hi Andrew
Will do. Thanks.

Glasses arrived today - I wonder how Friday will go....

:) Carleen

User avatar
Hill85
Newbie
Newbie
Posts: 9
Joined: Sat 27 Feb 2010 9:40 pm
Keratoconus: Yes, I have KC
Vision: I have Intacs implanted
Location: Boston, Massachusetts

Re: Keratoconus and Disabled Daughter

Postby Hill85 » Wed 05 May 2010 1:01 am

I really hope the new glasses make a big improvment, you and your daughter are very brave and I pray for the best.

User avatar
Carleen
Contributor
Contributor
Posts: 36
Joined: Sun 24 Jan 2010 11:58 pm
Keratoconus: No, I don't suffer from KC

Re: Keratoconus and Disabled Daughter

Postby Carleen » Thu 13 May 2010 9:03 am

Hi All,
Well, Jennifer got her glasses last week and even though she wasn't keen on wearing them she could obviously see better. I put on her fav DVD and sat with her to keep her from taking them off. After a couple of minutes she started looking around the room quite intently. She wore them for over an hour but as soon as I got up - off they went! I guess over the couple of days she was at home she would have worn them for several hours but only with me supervising her.

When I took her home I put them on her to show the care givers and she was determined to take them off. She must have seen a bit of movement from the next room cause she stopped fighting me and looked and giggled at her friend. She hasn't been able to see that far in years! The novelty wore off in a few seconds though.... Hopefully with a bit of persistance by the staff she'll get used to the glasses and keep them on.

I'm so glad the glasses made a difference to her. I just hope we can get her used to wearing them. She still won't look at me though. I guess I just don't look right anymore. I won't see her for another couple of weeks now so I'm hoping she's more used to them by then.

:) Carleen


Return to “General Discussion Forum”

Who is online

Users browsing this forum: Google [Bot] and 47 guests