Son of 7 years old just diognosed

[Benjollie99]

Evening All, Just wanted to say Hello, my 7 year old son Benjamin has just been diagnosed with Kerataconus badly in his left eye. He started wearing glasses in December 2014 after eye sight testing at school. Since then we have been backwards and forwards to check ups and constantly having eye drops, steroid drops and night eye creams due to dry eyes. Consultant finally mentioned this condition and we were seen by another specialist at a contact lens clinic Friday, it has been decided that they will try him with rigid lenses first if not soft. My poor boy has the relevant conditions along with this asthma, eczema, nut allergy (epipen) hay fever, also was diagnosed with a genetic liver condition in July 2012 to which there is no cure other than transplant but all doing well currently. Sorry feel like I've rambled a bit there but Ben still keeps smiling and carrying on x

[Matt_Offord]

Poor little mite. I hope they can find a solution for him and he can quickly adapt to yet another challenge! Wishing you the best of luck.

[Lia Williams]

Hi Benjollie,

Seven is young to be diagnosed with keratoconus - but it is good that he has a diagnosis so that he can be fitted with contact lenses to help his vision.

Don't worry that seven seems to be young for contact lenses as I have read that children are more likely to be compliant than teenagers when it comes to contact lens hygiene.

One thing you might like to look into is cross-linking. The aim of cross-linking is to prematurely age the cornea so it stiffens so that keratoconus stops progressing.

Lia

[John Thatcher]

Hello Benjollie,

I'm sure you must be finding it difficult to cope with all the information you are getting and sort out what is relevant but, if you haven't already heard it, the first thing to note is there is no need to panic and the second thing is that you are now in touch with a really good source of advice and support. A very large number of us with KC can empathise with your son and his allergies so you are talking with people who really do understand. The condition is certainly manageable but it may take some time to find the best path forward so do not be put off if there are a few setbacks. Nowadays there are all sorts of contact lens options available and, as Lia said, cross-linking (or CXL) may well be a consideration. I think you would find it very helpful if you could get to KC Group meeting somewhere to meet and talk to some KC patients and discover how others deal with it. In the meantime, don't hesitate to post any questions and remember that there is no such thing as a stupid question - if something is bothering you, then just ask. Best wishes, John

[Stealth_Za]

Just wanted to add on to what others said, you've mentioned that he is hypersensitive to allergens. It would be good practice to prevent eye rubbing as much as possible and to alleviate it with medication (confirm with your medical professional) as KC is aggravated by eye rubbing. Also the CXL procedure should be investigated at an early stage to prevent progress of the KC. There are many contact lenses available on the market to assist with vision correction (RGP; toric; Hybrid; Sclerals - {my favourite}).

With proper care, it's possible to mitigate most of the negative impacts of keratoconus. I hope all goes well for you and your baby boy

[Ali Akay]

Hi,
As someone with a lot of experience in fitting contact lenses for keratoconus, I have a slightly different approach to this. My views are:
1. Seven year old is rather young to be fitted for keratoconus lenses. Although a lot of kids 7 year old or younger can wear standard disposable soft lenses for short-sightedness, keratoconus is a bit different. As he is also rather atopic, he is likely to have sensitive eyes. My advice is, if the other eye has good vision and he is coping well, don't rush into him being fitted with a contact lens for the poor eye. If vision is poor in both eyes and specs don't help, it's obviously different and lenses have to be tried to improve his vision, otherwise, defer contact lens fitting until it's necessary.
2. Make sure general allergies, atopies are managed as well as humanly possible. Others have already mentioned eye rubbing. If his eyes get itchy and sore, this has to be managed with appropriate drops and/or tablets. Sunglasses may be helpful as well. If his eyes feel itchy, a cold compresses would often give relief and take the urge of rubbing away.
3. Unfortunately, as he is only 7, there's a strong possibility that the condition will progress during the coming years before stabilising. Hence, he needs close monitoring with regards to corneal crosslinking which has already been mentioned. He may be too young to have crosslinking at present and you need to seek the advice of a corneal surgeon experienced in crosslinking about the best way of monitoring/managing him. NHS funding for crosslinking is somewhat haphazard. If your local hospital doesn't offer it, ask to be referred to the nearest centre offering it. Otherwise, if finances allow, seek the advice of a surgeon experienced in this field privately.
I am sorry if I come across as somewhat negative. I am simply trying to offer practical advice based on my experience rather than telling you everything will be fine, and I hope this is helpful.