living with first hydrops

[Charlottes mum]

Hi,
Those of you who know about Charlotte's story I have another quick question - she is on day 5 of her first episode of hydrops (left eye), being her usual diva self and just generally happy, singing etc. Seeing corneal specialist on 11th Feb. Eye looks no worse and she's not complaining of pain just that she's fed up of it. My question is this: should we (her mum and dad) be encouraging her to keep her head up and not be bending over too much. Day centre have been great so far and have allocated her a new locker at eye level (old one was ground level which she bent down to access). Should we be keeping her from doing her gymnastics? She attends weekly sessions for people with Down's syndrome, it's quite low key really but she does do forward rolls and goes over on the bars. I don't want to stop all her fun but I'm not sure what to do regarding her activities etc.
Thank you again, Angie Slaney.

[Andrew MacLean]

Hello Charlotte's mum and dad!

I'm not sure what to say, here; let's recap. The hydrops in Charlotte's left eye is a tiny rupture in the endothelium (the membrane of cells at the back of her cornea). This tiny rupture is allowing the fluid from inside here eye to seep into her cornea and this is making the cornea go a little bit cloudy.

It may be that this is causing Charlotte to be even more light sensitive than usual. Perhaps this is why she is stooping? It would certainly make sense to me that she would look down rather than up: many of us with keratoconus have heightened sensitivity to light and this can be sore. Add the complication of hydrops and it may be that Charlotte is adopting a strategy that is minimising her additional discomfort.

As to gymnastics, it is hard to know what to say. Even forward rolls may increase Charlotte's IOP, but on the other hand she does enjoy her gym sessions. I'm going to cop out and say that I really don't know. I am pretty sure, however, that there will be somebody along in a moment who does.

Every good wish

Andrew

[Charlottes mum]

thanks Andrew.
I wasn't too clear. Charlotte isn't stooping. What I meant was should we be discouraging her from bending over such as in gymnastics and general day to day life such as putting on socks and shoes and picking things up off ground. Charlotte has good communication skills but will often say what she thinks we want her too or in the case of eye tests she often gives strange answers which as you can imagine makes a difficult task even harder.
she isn't an eye rubber but she does have a tenancy to tap and touch her lashes a fair bit which makes me wonder if she is potentially weakening her already weak corneas. So so difficult and mentally exhausting trying to keep one step ahead of her all the time while trying to keep calm at the same time!
regards,
Angie and Chris Slaney.

[Andrew MacLean]

Ah. I understand. I'm sorry for being so obtuse.

Any bending will tend to increase her IOP ( intra occular pressure).

Every good wish.

Andrew.

[Charlottes mum]

thanks again for your replies. we really do appreciate them.