Down's sydrome and Keratoconus

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Charlottes mum
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Re: Down's syndrome and Keratoconus

Postby Charlottes mum » Thu 11 Feb 2010 12:11 pm

Aw thanks guys! I gave Char the option this morning of not wearing the left lens for today to give her eye a rest but she was adamant that she wanted both lenses in all day. :) A good indication then that she's happy with fit and vision. I'm glad she chose to wear them both as not really the best way to go with only 1 in. :P
"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

kitty kat
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Re: Down's sydrome and Keratoconus

Postby kitty kat » Thu 11 Feb 2010 7:12 pm

She's a real star, put's my son to shame, well done both of you xx

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Charlottes mum
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Re: Down's sydrome and Keratoconus

Postby Charlottes mum » Fri 12 Feb 2010 10:26 am

kitty kat wrote:She's a real star, put's my son to shame, well done both of you xx


Aw! Your son is just dealing with it in his own way I guess. And the mini-scls he has are bigger than Char's RGPs so thats gotta be hard for him. I do thank god (or whoever :roll: ) everyday that Char tolerates all this though. Take care. Best wishes, Angie4Char x :lol: :lol:
"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

kitty kat
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Re: Down's sydrome and Keratoconus

Postby kitty kat » Fri 12 Feb 2010 9:53 pm

Yip he's a teenager lol. He couldn't wear the semi serals, so now wearing a kerasoft on the right eye and waiting on a hybrid for the left, did have an appointment for a fitting at the begining of March, but had to cancel as I jury duty :?

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Charlottes mum
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Keratoconus: No, I don't suffer from KC
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Re: Down's syndrome and Keratoconus

Postby Charlottes mum » Sat 13 Feb 2010 9:42 am

I think that we may have found a solution to the eye drops at college issue............................This morning I suggested to Char that she have a go at putting her drops in herself.She was quite happy to give it a go and, after a bit of giggling when half of it went down her face, she hit the jackpot! :lol: Charlotte opened the vial herself and we did the, my hand over her hand method for putting the drops in her left eye, she did her right eye herself. I explained to her that she should put her head back a little bit and look up as if she was looking at a cap on her head, then plop! :D We are using the systane lubricating eye drops in convenient preservative-free vials (recommended by the optom at the eye clinic) Its half term hols this coming week so we've got a full week to practice. Hopefully her college will be ok with this cos it potentially solves the problem of waiting for the letter from the eye clinic re drops in at college :D :D Happy bunny here today :lol:
"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

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Re: Down's sydrome and Keratoconus

Postby Andrew MacLean » Sat 13 Feb 2010 3:19 pm

Kit kat

comparisons like that are hard to sustain. Consider all that your son has to deal with and add the difficulty they have had finding a lens that he could wear and he is looking a bit heroic to me.

Andrew
Andrew MacLean

kitty kat
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Re: Down's sydrome and Keratoconus

Postby kitty kat » Sat 13 Feb 2010 7:12 pm

Cheers Andrew,

he is getting there, it's a year since we discovered how bad his eyes especially the left had got, and will be a year in april since he had cxl that didn't work, as his cornea was to thin, it has been hard for both of us but I know it won't happen over night.


Angie4char

Thats great Charlotte is begining to put her own drops in, jordan puts in his drops at night, to help reduce pressure, and at first there was more down his face also

:D :D :D :D :D :D :D

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Charlottes mum
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Posts: 139
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Keratoconus: No, I don't suffer from KC
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Re: Down's sydrome and Keratoconus

Postby Charlottes mum » Sun 14 Feb 2010 9:24 am

Andrew MacLean wrote:Kit kat
he is looking a bit heroic to me.
Andrew


I'll second that! :D
"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

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Charlottes mum
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Posts: 139
Joined: Tue 24 Nov 2009 5:14 pm
Keratoconus: No, I don't suffer from KC
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Re: Down's syndrome and Keratoconus

Postby Charlottes mum » Sat 27 Feb 2010 1:49 pm

Just wanted to let you all know that Charlotte is still coping really well. Managing to put her drops in by herself at college (albeit under supervison). She's up to 10-11 hours daily for both lenses now which is good I think. She has them out after tea, takes a shower (lenses sorted by me!) they go back in for the "soaps" most evenings unless she's tired. She wears them to train at gymnastics in too and only once has one come out, she actually caught it herself :shock: and went running over to Jenna (her P/A), with it on the end of her finger, who stored it safely and brought it home after the session. Both Char's P/A's have a little kit that I give them to take with them when they go out on a jolly with Charlotte. College going well. No lost lenses so far (either in her eye or out) since that one day when the right eye lens was under her top lid. I treat Charlotte to her first ever facial last week (as a reward for being very grown-up and sensible with her CL's) and I allowed the beauty therapist (a lovely lady who I've known for ten years - so she knows the history of "everything Charlotte" :wink: ) to wax her brows!!Char had a bit of a mono-brow thing going on and while she was wearing specs it wasn't really visable, but since she's been wearing lenses it's really bothered her............. :roll: so off it went! Thats the limit tho! Just the little bit in the middle!! Back at the eye clinic next Tues 2nd March to see Brian Melia or Agnes Ali for a check up. :) :)
"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

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Re: Down's sydrome and Keratoconus

Postby Loopy-Lou » Mon 01 Mar 2010 10:57 pm

what fantastic progress!


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