Down's sydrome and Keratoconus

[Charlottes mum]

Thanks. Starting to realise that more and more.

[Charlottes mum]

A quick update here; Collected Charlotte's new left CL last week. It was ready earlier than we had expected. Charlotte is still very tolerant of her Dad or myself doing the "ins & outs" for her and so far the lens is staying put! She is reading with her book or mag further away from her eyes & her handwriting is much neater, she's enjoying wearing the lenses, only occasionally does she mention a "little jab feeling" (as she describes it) but doesn't ask me to take the CLs out though. She is looking forward to going to Hull New Theatre this coming Saturday to see High School Musical 2 Live on Stage! We've had tickets since last September and she's been counting down the days!

Other things: I have been a little concerned because Charlotte has started touching her eyelashes occasionally when the lenses are in. Initially I tried to distract her (subtly) until the other night when I said "Just leave your flippin eye lashes alone!" She did it so much one night that the new lefty popped out! Not good, we spent 15 mins on our hands and knees looking for it with me shouting "Mind out, don't stand on it!" We found it about 10 feet from where she had been sat it was ok after a wash, soak etc.She is currently building up her wearing time with a view to giving the CLs their maiden voyage to college for the day in a couple of weeks. Thats when the "fun" starts! I have already been in to chat to the staff about what to do if a lens comes out (it'll be just catch it and store it in its little tube) if its both lenses out then Char will put her specs on. Hopefully the lens will be not be damaged or lost ..........I know she is nervous about wearing them at college or indeed anywhere that I am not, sometimes they float but only rarely and usually only if she has messed with her lashes So, on we go life for Char with both CLs at last! Appt on Friday 29th at the eye clinic to check CLs etc.

Char and me.jpg

Charlotte and me

(126.29 KiB) Not downloaded yet

[Andrew MacLean]

It may be that charlotte is touching her eyelashes because her eyes feel dry.

when this happens to me, I pop my lens out and flood my eye with clinitas soothe. I can then put my lens back in

Andrew

[Charlottes mum]

Aaaah! Thank you! Thats a really good point! I have some drops from the eye clinic that I will offer her. Charlotte's pretty much a regular every day kid (if you get what I mean?) and maybe I expect her to just tell me how she's feeling (she does usually) there's not usually any second guessing in our relationship, she gets on with most of the challenges that life throws up! Makes me feel very humble most days humble and proud as I know that we are very lucky for the most part that she is this way. Thanks again. Angie4Char

[Lizb]

BTW you dont actually have to take the lenses out to put clinitas soothe (and other dry eye drop) in. Just make sure that the drops you are using for dry eye are compatible with the lenses Charlotte has. I know that the hospital gave me eye drops for dry eye last year when i had CL, which werent compatible when wearing lenses About sums my hospital up at times

[GarethB]

I use Systane by Alcon and get the best results for dry eye if I put a drop of Systane into the well of the lens before I put it in my eye.

Charlotte may well have always had dry eye which is excacerbated by the fact as the lens moves on the eye, it disrupts the tear film so making the tears evaporate quicker.

On the finding the lens front, I find the quickest and easiest way is to put some gauze or use a pair of my wifes stockings to cover the end of the vacuum cleaner extension and gently wave that in the area the lens has been lost. The lens is gently held agains the the gauze/stockings ready to be retrieved and cleaned for use.

[Anne Klepacz]

Another lens finding tip - I shine a torch around where I think the lens has dropped. It's much more visible when it glints in the light. It's great that Charlotte is doing so well. Well done all!
Anne

[Charlottes mum]

Thanks so much for the advice and for the tips on lens finding! Once again this forum comes up trumps!! Angie4Char x

[Sweet]

I use Systane day and night before and after I have been wearing lenses. It really helps with any dryness! I also use Blink eyedrops in the day, which you can use with a lens in. Just make sure that you buy the contact lens one.

Pulling your eyelash can be a way to move the lens a little, maybe because it is too dry or hurting. It is better than using your finger to move the lens and getting a fingerprint on it! The only problem as you have found out is that the lens can fall out!! They are very good at bouncing and being nowhere near where you thought it would be! I use a torch resting on the floor, as a lens does shine and will be noticed easier.

Hoping that Charlotte builds up wearing time well! Best of luck with it!

Love Claire X x X

[space_cadet]

That is a great photo of you and Charlotte.

That is awesome that she has High School Musical to go see (one of my cousins adores HSM and would be jelous if she knew)

Sorry iv not commented in a while things have been hetic. It is worth persavering till you find which drops work best.

Lea
xo