HELP!!!!! My 5yr old little girl has been diagnosed with KC

[Aussie Mum]

Hi There!
I am from Australia, Queensland. Yesterday my beautiful little girl was diagnosed with KC.....
It all started when Madison said to me one day that she couldn't see ants very well. So I booked an apt with the specialist and have been referred for second opinion in 4 weeks.
When I was sitting there in their office yesterday and she told me, she has a stigmatisim and KC, I knew kind of what that meant and it was scary.
Family history.: My mum has severe short sightedness and severe KC and s avoiding getting a graft as she os worried about anti rejection drugs as a relative had a kidney transplant and the rejection drugs are insane and doing terrible things to him. Mum started glasses at 10 yrs and KC diag by 22. I had really bad shortsigntedness and was lucky enough to be able to still be cleared for LASIK. However I have no stigmatism or KC.
So when we got home last night I hit Google.

I am on this site due to a lack of forums in Australia and this honestly seems to be the best site worldwide.

Has anyone else heard of young children getting this, this early???????? I have over the past many hours read alot on your forum on crosslinking and I think she is way too young for that developmentally. My concern if she does have this KC at 5..... how will she be by 20??????

Thanks for any advice you can give re KC and young children.

[rosemary johnson]

Hallo, and welcome - glad you found your way to us.
Sorry to hear about your shock news - nasty surprise indeed.
I think I can remember hearing of someone being diagnosed at 4 - oddly enough, also in Australia, IIRR. With luck, her mum too will be on here again soon and can tell you herself.
It is certainly unusual - teens or early 20s is more usual; though if one is aware of KC and knows to look for it, maybe because of a family link, maye it is spotted early that with someone whose family have never ehard of it.
I wish you and your daughter all the very best with coping with her KC. I agree CXL at age 5 is a very big GULP!!!! indeed.
BTW, please do say to your mother that the anti-rejection drugs regime for someone who has had a corneal transplant is very different, in most cases, from people who have ikidney, heart, liver, etc transplant.
As I understand it, kidney, etc etc transplant people have to take immunosuppressant drugs (tablets, I think), and for the rest of their lives. Most people who have cornea transplants just have to put in anti-rejection eye drops, not take tablets, and these do decrease in dose and can be phased out - once, it was only for three months, though a year might be more common nowadays, maybe 18 months if one has problems. Certainly not for ever after, at least that would be very uncommon.
Not that this is much help for your poor relative with the problems fromt he kidney transplant drugs - and if there is a bad reaction in the family, being cautious about any long-term steroid drug use might well be sensible. (I had a very nasty reaction to the steroids used in a corneal transplant op - very long story!! - the eye specialists keep trying to tell me the graft looks wonderful, which is all the more galling seeing how messed up it has left the rest of my health - not that this is a very liely occurrence for other people, I hasten to add.)
As regards the future for your daughter - who knows? I guess many of us would like a crystal ball. I'm sure we all hope for the best for her, and you, and your mother too.
Rosemary

[Lynn White]

Hi there Aussie Mum!

This is indeed young to be diagnosed! Before you get involved in treatments (and yes, CXL at this age has to be thought about very carefully) you will need to get that second opinion.

Also, on what basis was this diagnosis made? Do you have any other information such as topography? What is her current visual status? There are lots of questions I could ask!

Let us know more information and we will try our best to help.

Lynn

[Aussie Mum]

Hi Lynn and Rosemary!!!
Thanks so much for your replies and I feel so much better to get replies so quickly.
I agree it is so young. My mantra is just get the second opinion as the first doctor was aware of the family history.
They never gave me any details or numbers on her eye's, and I never thought to ask...
I will in 4 weeks as soon as I get home, jump on line and write down her topography and results of second opinion. I keep thinking surely not at 5... However rosemary pointed out possibly a similar report of KC in very young children.

Her current visual aides - none as yet. There is a definate prescription they report, however they want to want to give her glasses after the pediatric specialist has also taken her prescription as it is so hard with a 5 year old. She has not long ago nailed down her alphabet, and the assessments are so reliant on a solid vocabulary and attaention span. Her answering the questions, "is the frst or second option clearer, then sharper, black on green / red" etc when on for about 20 odd mins and a 5 year old cant hold attention easily to repetivie questioning like that.

UPDATE : Changing pediatirc specialists - the one we were sent to has repeated reports of not relating to chldren , not using shapes, and making them cry. Additionally is seen to be rude and arrogant so the search is now on for someone easily relatable and not intimadating to parents asking questions

And Lynn - passed news onto mum... and she has made an appt with her specialist to discuss, so thanks for helping her and maybe improving her care and life quality

[Lynn White]

Hi there...

No problem - we are all here tohelp

I have made contact with someone very knowledgeable of kerataconus in Australia and he is very willing to help find you someone who can properly advise you. You need a keratoconic expert not a paediatrician.

I am rather taken aback that someone should actually try and examine a 5 year old by asking whether letters are clearer or not, or attempt a duochrome test (the red and green bit)!

I will also send you a pm to discuss this further so please do check out your messages.

Lynn

[Andrew MacLean]

Ausie Mum

Welcome to the forum. I hope you get on well with the people whom Lynn is suggesting; please do keep us in touch with how things are. Tell your 5 year old that she is in the thoughts of people all over the world, and that we all send her our special good wishes.

Andrew

[Loopy-Lou]

I'm really sorry about your little girl but bear this in mind - people can be diagnosed with KC and get away with glasses for life, not everyone deteriorates to the point of needing surgery.
Most people who have had cornea transplants don't take oral anti-rejection drugs neither, it's mostly topical [eye drops]

[Aussie Mum]

I would just everyone to know how fantastic you have all been and your willingness to share knowledge and all of your exceptional kindness has been very much appreciated.
Thanks to a very special Lynn we are working on getting more infomration.

THANKYOU EVERYONE, I will keep eveyone posted after next appt Wed

THANKYOU AGAIN

[dazzabee]

I am sure you will find a solution for your daughter. My brother had problems with his eyes at 2 (albeit not KC and not in Australia) but after a bit of searching for the right Optom things began to get put into place. This was in the 80s I might add, so with the right support and guidance your daughter will get the treatment she needs.

I was in Australia last year for 3 months and had to visit a few Optoms whilst there (one in QLD, 2 in NSW and 1 in WA) and I was suitably impressed by their knowledge so I think you are in safe hands.

Good luck and let us know how things pan out.