The best source for info on ptosis in children...

...is the Yahoo group titled "Ptosiskids." I put up this blog hoping to get some discussion and ideas going here on congenital ptosis, but discovered this Yahoo group is a better place for feedback, and there's an archive of messages to answer most questions.

I'm putting this message up for people who are drawn here by Google.

Type in yahoogroups.com, then search for Ptosiskids. See you there...

Blepharophimosis Ptosis Epicanthus Inversus Syndrome

That's a mouthful often abbreviated as BPEI syndrome. You can see more here.

Famous people with ptosis

Here's a video where Tegan Quin of the wonderful Canadian sister act Tegan and Sara (yes, I have all of their albums) explains her ptosis.

Other famous people with ptosis? According to Wikipedia: Thom Yorke of Radiohead, Paris Hilton, Lenny Kravitz and actor/director Forest Whitaker.

More about congenital ptosis

There is plenty of good information about congenital ptosis out there. I know a lot of our concerns were right before and after surgery. There are also the ongoing concerns, including vision and head posture.

This article is in academic-ese, but raises a good point about the difficulty of keeping both eyes working evenly--even after surgery. Reading between the lines, it's telling you that the other eye may have problems (this is something our surgeon never talked much about) after surgery to correct congenital ptsosis.

Here is a very interesting video that discusses congenital ptosis, including birth trauma as a cause.

Again, I put up this page to engage other parents in discussion, so if you come across this, please do leave a comment about your experiences.

Why I'm creating this blog

I get occasional visitors to my other blog (I can see you!) who are in search of information on ptosis. My son was either born with (congenital ptosis) the condition or got it through birth trauma. Ptosis, for those who don't know, is a weak or undeveloped eyelid muscle. My son has this in his left eyelid. He's had one surgery after the age of 1 using a silicone sling to have his eyebrow do most of the work lifting the lid.

We went into this with full knowledge that he will need another surgery (or more). The second one will use fascia lata--tissue harvested from my son's leg. We get varying comments on when this will occur--sometimes we hear between ages 3 and 4, sometimes between ages 4 and 5.

The first surgery resulted in another problem: Our son's eyelid was now higher (though not really even with the other eye--but it unexpectedly turned inward, a condition called entropion. Also, we must apply a liquid tear solution to his eye before nap and nighttime sleep because the eyelid does not close completely.

The other problem we are dealing with now is the eye with the weak lid will sometimes cross. This is not actual crossed-eyes, we are told, because the eyes are still tracking together. Instead this condition is supposed to be him compensating for a farsightedness that, we are told, will be fixed by glasses. The condition comes and goes, sometimes lingering off and one for a few days and then not reappearing for weeks.

There are other issues like his tendency to close the weak eyelid completely in the sun. And, of course, the biggest issue is any form of social stigma. Our son is very recently in a parents' day out program so we are about to discover what this is truly like.

This is all a way of saying I hope others with children who have congenital ptosis will find this location and exchange their own experiences. Doctors can surely chime in and correct any errors they see here--I am just related my personal experiences and viewpoints. If you stopped here by going to a search engine, please leave a comment. Tell us your story. We'd love to compare notes...