HELP - My baby has QUERATOGLOBUS

[paula]

Hi,

I don't know much English but I will try to explain as well as possible... I found this forum looking for information on queratoglobus ... I saw some people diagnosed with this disease and we hope you can help us.

We have a baby of 6 months, when he had 15 days old he was diagnosed with a possible queratoglobus. It seems that the diagnosis is true because the cornea has thinned considerably since then. And the spherical shape of the eyes seems confirm the disease. Due to pachymetry gave results on the limit of 400 microns we decided to do a crosslinking in one eye (at 3 months of age). It seems that this did not has worked (the doctor has this intuition, but perhaps he says it is still early to draw a conclusion) and we are very scared. The specialists say that this is one of the few known cases of babies with this disease and they do not know any case like (at least in Spain). We visited several institutes of ophthalmology and one pediatric public hospital in a very prestigious.

If anyone knows a similar case or can give us some information to help us understand this disease we appreciate it very much.
Our son could have a very low vision? can go blind? it is possible to transplant?

Many thanks for your help!!

[longhoc]

Hi Paula -- or, better, buenos dias

(Sorry, that is the limit of my Spanish !)

Welcome to the forum. My heart goes out to you on the situation you find yourself in. It must be both distressing and a worrying time for your family.

I believe the condition your son has is, in English, "Keratoglobus". There does as you say seem little information available on it -- the best I could find (which you might have already seen) is http://en.wikipedia.org/wiki/Keratoglobus.

While the symptoms are similar to Keratoconus, it doesn't seem to be the same disease process so I myself can't add much to what is in the link. However, the indicated treatment is listed as penetrating keratoplasty -- this would be the same as for advanced Keratoconus. What I can't tell is whether or not modern surgical techniques would permit a "graft" -- meaning that the full depth transplant is modified leaving certain eye tissue still intact. This is thought to be less drastic than penetrating keratoplasty. But it could be that with Keratoglobus you have to remove all the affected tissue. The article I've linked to does suggest that a modified "graft" procedure may be effective treatment -- but it does look like there's a lack of information on that subject as yet. Whatever the answer to that one is, I guess the real challenge is performing the surgery on neonates (or in your case, a very young infant). Has a surgeon offered to perform a penetrating keratoplasty or other surgery on your son -- or is it that you can't find anyone at all to talk to about what to do by way of treatment ?

Am hoping that one of our professional visitors to the forum (or as you say, someone with direct experience) can offer something more substantive than what I've been able to.

With best wishes,

Chris

[paula]

Hola Chris!

Sorry, I mean "keratoglobus", as you say, in spanish is "queratoglobo"

First of all thank you very much for your response, especially so quickly! Our baby is fine at the moment, now 2 diopters in each eye and 400 microns in the central part, so not currently pose a transplant. We are concerned about the future, we have no reference, and although the doctor told us that when the case can make a transplant (technique not specified) tells us that in babies is very complicated and in the specific case of keratoglobus, since it has to suture a healthy cornea (so thick) with one that is thin .. in keratoconus this does not happen because the periphery of the eyeball is thick. Our anguish, and I suppose that is shared by many, is to know where we go, what we can find, mainly because he is very small and it seems to go faster when it appears as soon

Thank you very much for everything, a greeting

[GrandPaClanger]

Hi Paula

Sorry to hear about your baby. I was diagnosed with Kerataconus when I was 17. I was treated with hard contact lenses very successfully for 30 years. However last year I could not wear the lens in my right eye without it causing me problems. I was then told that I have Keratoglobus in both eyes. I had a full thickness graft in May so a graft may be possible.

I read this a while back about a transplant on a baby. Not the same condition but it shows what's possible

http://eyedocnews.com/006216-corneal-tr ... s-anomaly/

All the best
Ian

[paula]

Hi Ian,

Thank you very much to answer, for us is very important. I hope your graft was well! how is your vision now? I guess our baby will eventually also need a graft but each case is different ... being so small we fear the worst.

I hope everything goes well and soon find an effective treatment!
Thanks for the info

Paula