Charlotte has had a hydrops today - am beside myself

[Charlottes mum]

Hello,
Its been ages since I've posted on here, please allow me to re-introduce my self. My name is Angie and my daughter Charlotte who is now 20 years old has KC diag Nov 2009. Charlotte also has Down's syndrome. To save repeating myself and wasting board space our story is on the forum under my username.
She is currently prescribed semi-limbal (sorry if spelt wrong) contacts and despite being reluctant to wear these ones she has in the past week really tried hard with them. I've been so proud of her. But then we had a disaster late this afternoon. She arrived home from day centre after wearing contacts,all day and was fine. Eyes looked super. I removed her contacts as we agreed to before tea and she went off to her room. 5 mins later she walked up to me and said "mum I can't see properly out this (left most KC cone) eye" I took one look and just knew. Hydrops. I'd only ever seen pictures of hydrops before but it's very apparent. I drove straight to the eye clinic out of hours dept in Hull about 12 miles away from me (without an appt) we were seen with 15 minutes. The staff were amazing. They could read my panicked face I think. Doctor looked with slit lamp and did all his checks etc. Confirmed what I thought. He said he'd never actually seen one so early before. I told him her eyes where totally good at 4.20 pm and by 4.35 - hydrops. Meanwhile Charlotte is understandably upset and her eye hurting.
Next step is too see the corneal specialist on 11th feb which is 2 weeks away giving time for the hydrops to hopefully sort itself out a bit so that they can see whats what. Came home with appt booked and a tube of lacri-lube plus a script for more.
Charlotte's so upset that she had to miss gymnastics and the chance to wear new leotard for first time. Her keyworker at day centre has been brilliant in supporting her to wear her contacts more with plans for a trip to a cafe for them both to encourage her so now Charlotte is upset that she's missing out. I feel wrung out and bitterly disappointed at KC. We just don't know what will happen with it. The word graft doesn't seem so distant anymore. How will she cope with that (if it even works) and how will she cope will healing times given her learning difficulties and behavioural issues. I thought we'd really nailed it today. Contacts in building up the wear more and more with lots of praise for Charlotte, she was being brilliant with them like in the beginning. Last week at clinic routine appt optom said all was good eyes look good no changes. I know hydrops can just occur so spontaneously but honestly I feel like I've totally let my daughter down after building her right up.
I know nobody has a crystal ball but any advice at all would be really appreciated.
Thank you. And sorry for ranting post. Angie - desparately worried mum of Charlotte

[Andrew MacLean]

Angie

I am so sorry to hear the news; and please do not apologise for sharing your worries. That is what we are here for!

Take a couple of deep breaths and remember that Charlotte has been through a lot, and that this episode is just the next hurdle for her to cross. It seems that your first visit to the out of hours provision went very well; the doctor is probably not used to meeting people whose mothers are so attentive to their eyes!

So you know that Charlotte has a hydrous; the next thing will be to find out what the ophthalmologist is going to do about it. There are treatments, but they all take time.

Keratoconus is a wretched condition; maybe more so when you are living with it at second hand. It is always easier to get on with things than it is to watch someone you love having to face a daily struggle. Be assured that you are in the thoughts of all of us here.

Let us know how things go on February 11.

Andrew

[GarethB]

Hi Angie

I have never had hydrops but I will do my best to share what I have read on this forum and heard from patients and consultants at support groups and confrences.

Hydrops can actually benefit the cornea because the scar tissue left can result in the cornea being strengthened and in some cases the vision is better than prehydrops. In fact there was a time when consultants induced hydrops in an attempt to try and control KC becasue of what had been observed. so there is the possibility that this could be a blessing for Charlotte.

Has crosslinking been discussed?

I know that it isn't routinely available on the NHS, but there was a time intacs wern't but the procedure was still carried out on the NHS. The consultant had to apply for the funding and Charloottes history could be what is required to tip the balance so she can have the crosslinking procedure. It is invaseive and carries a recovery period, but less so than a graft and I have spoken with some that have had intacs with the crosslinking and now only require glasses. These are perhaps other options to discuss with Charlottes consultant.

Should a graft be around the corner the good news is that of all the patient groups that require grafts, it is us with KC that has by far the highest success rate with if I recall correctly an alomost even split beteen those still needing contacts and those needing glasses. The recovery period is 12 - 24 months but you do get acclimatised to the stitches, the eye lid toughens up. The tedious bit is the regular use of eyedrops and the wait until you get your first glasses or contact lens prescription in this period. The life span of a graft is still quoted between 5 - 10 years but from my questions asked at support group meetings and confrences is because many of us end up moving hospitals over time or being able to have our visio managed in just the contact lens clinic or by a highstreet optomotrist.

By July 2013, I will of had my right graft for 24 years and for my left eye 23 years, both were done in the same month but exactly a year apart. With soft lenses for KC I go from 6/60 (no lenses) to 6/5 with lenses and I can manage to wear them all my waking hours.

Hopefully I have given you some food for thought to help discuss the options available to Charlotte.

I wish her a speedy recovery.

[Charlottes mum]

Thank you for those comforting words. Charlotte had a quiet night, she was exhausted which helped. She slept right through although I didn't manage much sleep myself worrying into the wee small hours.
Am keeping her at home for a couple of days at least which she's NOT happy about at all. She has a busy little social life and this is so annoying for her. Just trying to reduce risk of infection etc. by keeping her with me a while. Eye looks pretty much the same to me but she isn't complaining of pain particularly, I gave paracetamol earlier though, she's more bothered by the "blurry" at the moment. Bless her, she's a star she really is. Thank you again, and of course I will follow up regularly. With such an absence from the forum there is certainly a lot to read through. Angie and Charlotte x

[Anne Klepacz]

Hello Angie,
Charlotte's story has been such an inspiration to anyone with KC and Downs Syndrome - and to the rest of us who moan about our contact lenses! Everyone - above all you, but also all the staff at Hull and all the day centre staff have been brilliant at supporting Charlotte for the last few years, so it seems so unfair that you now have this set back. But although it can take a while for a hydrops to clear, I'm sure you'll all get through this and Charlotte will be able to take up all her activities again before long. All our best wishes to you both.
Anne

[starlight93]

Hi Charlotte,

Hydrops can be a wretched experience, I had my first one just 2 months after getting KC!!! It was very traumatic at first, but don't worry, you get used to it and after a while can manage fine with the other eye. Ask your doctor about the gas injection procedure, I had it done and my hydrops cleared after 2 something weeks. I still have a scar from the hydrops, and am going to have it tested after a year. I'm praying hard that its not central scarring, I heard that if the scar is off center you can have even better vision than before!

Cheers

[Charlottes mum]

Well day 2 of Char's hydrops and she is happy in herself, not complaining of much pain more the annoyance of blurry left eye. she describes it as a shadow of someone going by who is not really there. she said its horrible and she is fed up. her keyworker phoned today and is very keen to have Char back in her routine at day centre. they are extremely good there and I know she would be taken care of 100% doing drops and lube for her eyes etc. Char is keen to go back to her friends. I am trying not to wrap her in cotton wool but its difficult. I am reluctant now to put in the right eye contact until we have seen the cornea specialist on 11th Feb. I know that her right eye will be working extra hard to compensate for the left being blurry from the hydrops. I am scared that I will hurt her. we were advised to get lenses in but she went for months with no lenses and then within days of going back into contacts again the hydrops occurred. you can imagine what I am thinking now? was it us making her have them in that caused it? almost makes me wish I had not followed the advice of the Optom and just allowed her to go without contacts in. I know they really help her but look at what's happened. She was happy and coping with not wearing them (her choice) and then this! she's NOT happy now. i know wearing contacts improves her vision greatly and hindsight is a wonderful thing etc etc. but I just don't know if I can insist she wears them now. In clinic last week there was not hint or suggestion of a hydrops on the horizon, I know of course that its spontaneous but of course I wonder??????????????

[jay87]

I've never heard of contact lenses causing a hydrops, I wouldn't blame yourself. Its the KC that causes it, not you. I hope charlotte has a quick recovery. I guess it's up to what she prefers really, does she cope ok with glasses? I myself can cope with glasses, but not a crispy crisp vision which annoys me.

[Charlottes mum]

thank you. Char hasn't had that longed for crispy crisp vision in years I believe. shes just not happy with contacts despite our pleas, bribes and cajoling for the past 3 years. there have been good results re vision with contacts but her unhappyness is the price. and as a mother I can't ask her to consider them anymore I feel. very difficult for all.

[Anne Klepacz]

Angie, before you blame yourself, have you looked at the article on hydrops on the home page of this site? www.keratoconus-group.org.uk/sitev3/features.html
Hydrops means the back of the cornea splits, not the front, so I don't think there's any way that going back into contact lenses could have provoked this. Unfortunately, it is something that just happens out of the blue - if there were any warning signs that we could watch out for, the medics would be telling us about them.
Anne