Down's sydrome and Keratoconus

[Carleen]

Hi - I'm so glad to hear you have had a good outcome with your daughter. My intellectually disabled daughter (30 but with the ability of about an 18 month old and no speech due to cerebal palsy) has just been diagnosed with severe KC in her left eye after suffering from acute hydrops on Christmas eve. It was very distressing for us all but she is a lot more comfortable now. Our journey living with KC is just beginning and I have found this forum great. It's good not to feel alone. Good luck with Charlotte's progress. You and your husband sound very supportive - she's a lucky girl to have you as parents.

[Charlottes mum]

http://www.facebook.com/v/107761829236470

A short vid of Charlotte having her lenses in. How brave!

[Charlottes mum]

Eye appt today went very well. Charlotte saw Brian Melia this time with Agnes popping in to say hello to Charlotte. Brian checked the power of the 'script. Very good, he was pleased with it. In with the fluorescein and not happy with the fit of the left lens (kind of as Agnes had anticipated last time). He tried 3 other lenses in Char's eyes, she was happy and willing the whole time. Brian praised her and said that she was a total superstar (I knew that already ). When I think back to just a few weeks ago and how long it took to get a lens in her eye................................
Brian found a good fit, slightly steeper Rose K. with mods. Ordered and should be with us in a week or 2. I asked my few (prepared) questions and was satisfied after a lengthy chat with him re the continued care of Charlotte's eyes. He stressed that Char needs to increase her wearing time and not to worry if a lens gets lost. He totally put my mind at ease (again) and Charlotte was chatty and chirpy throughout the appt. . Char and I left the clinic, had lunch out, shopped, then I bumped my car on the way home! We were fine, it was very minor (my car nears reps tho )the positive is that although Char was screaming her head off, (tears, snot.........the lot!!) the lenses stayed put! No floating. Nothing. She wore both lenses from 10a.m right through the day until 7.30p.m with several drops-stops. A good day apart from the car thingy

[Carleen]

Great to hear that Charlotte is making good progress with her lenses. You must be really proud of her. I know when I started wearing normal contact lenses for short sight I used to get really stressed at the thought of having to put them in and then having to take them out at night! Loved the photo of you two. Sorry about the car - glad you were both ok (apart from tears etc!) .
Cheers
Carleen

[Charlottes mum]

Charlotte has been going to college this week wearing lenses for the first time (albeit just the right eye one). The left still "nips" so we're leaving it out for college until the she has built up wearing time in the new replacement left which only just arrived in yesterday morning's mail. I had a long chat, with the head of the student centre (for 16-19 yr olds with learning difficulties) which she attends, about all the "ifs, buts and maybes" and he was very supportive. He explained that they have never had a student wear contact lenses before therefore he has contacted the LEA re any provision for staff training in order that they can help Charlotte with her lenses if there should be any probs while she is there. As things stand at the moment the staff are not allowed to put in and take out lenses. Its classed as too invasive and currently is against their policy due to any "come-back" issues etc. This I totally understand and agree with which is why I sent multiple copies of a letter (ahead of this Tues) that I had prepared explaining all re her lenses. Copies to Char's pastoral teacher and the T/As who work with her. I requested that they telephone me if any there are any issues or if Char is having any discomfort. Under no circumstances must they attempt to reinsert or remove a lens due to the delicate condition of her corneas (this I wrote prior to realising the LEA's policy). My plan is to just drive straight there should they phone me. As a full-time Mum I'm fortunate that I wouldn't have to leave "work" to get there pronto! Its half an hours drive from home but a lot less if I'm in Hull city. We're on day 3 and so far so good - no phone call (hope I'm not tempting fate here ) Weeks ago I sent the info leaflet for students with KC and the college straight away referred Charlotte (with my permission) to the ESHV (Educational Services for Hearing & Vision). They have been in to the college and carried out a preliminary assessment report. The lady who met with Charlotte is called Linda Tackie, she was extremely helpful and had some good suggestions re visual management for Char. These are along the lines of the Lookup website and all pretty much common sense stuff now we know the diag of KC. The reason for long post? I feel that it's important to share these positives, Charlotte has got everybody "on board", she's managing so well. If someone had of told me 6 months ago that she would be wearing CLs (and with such amazing confidence) I would never have believed them.

[saoirse]

It sounds like your daughter is doing amazingly well! I'd also just like to say how fantastic Maggie Woodhouse is - I sat in on quite a few of her special assessment clinics while I was at uni, and always left the room feeling really inspired by her work. Wonderful woman.

[Charlottes mum]

Charlotte is wearing both L & R CLs daily now. She started wearing the new left one full time this weekend. All going well. The only prob is that the staff at her college are not allowed to put in her eye drops (systane for comfort). They have asked for a letter from her optometrist to keep on file at college. I guess they are just worried re any poss "comeback" just in case. Brian Melia has said he can provide a letter for them. Until then I put Char's drops in at 8.00a.m just before she leaves the house and she's out all day until 4 p.m. She has said that she has a little bit of discomfort (she describes it as a scratchy feeling) but generally she is coping really well Last Friday she came home and the R lens was under her lid but she didn't seem bothered (she'd not complained to staff at college hence no phone call to me) From what I can gather it happened after lunch, she played footie at the sports centre in the afternoon effectively "lensless" Should I be worried about this I wonder? Her eyes look good, no extreme tearing or redness. Although Char is doing good I am worried about what she's like when I'm not there, ie the drops issue. I do feel that her college are as helpful and supportive as they possibly could be. I speak with the Senior Teacher regularly and he often pops along to Char's classroom to see for himself that she's fine. That's in addition to the pastoral teacher and the T/As, so I'm happy with all that. Its just a constant worry in my mind that I could be doing more. Maybe it's just me stressing?

[space_cadet]

Charlotte is a star

[Andrew MacLean]

I agree. If I was on the committee I'd suggest a new award "KC'er of the year", and I know who I'd be nominating for the first prize.


Andrew

[Anne Klepacz]

I'll second that, Andrew! It's just amazing how well Charlotte is doing - seems like she could teach the rest of us a thing or two! And stars too, for Charlotte's mum and the optometrists that Charlotte is seeing.
Anne