HELP! Has anyone fit a patient with Pfeiffers Syndrome (type 1)

[jpeaslee]

I have a patient that came in today with Pfeiffer's Syndrome (Type 1). His surgeon recommended something with cable temples which won't really work with his hearing aid, and something with nosepads (which I'm skeptical we can get adjusted to sit high enough and far enough out. For those unfamiliar with Pfeiffer Syndrome (as was I until about an hour ago), here is a child with type 1 (same as my patient). He eyes are a little more protruding than the child in the picture. He currently is wearing some cheap sports goggles style plano sunglasses. They have an elastic band and have a one piece shield style lens, with some thick padding around the edge of the entire frame. We have some rec spex that almost work, but really need to be lifted about 1/4" further off his face. Anyone have any thoughts, recommendations, etc?

[rbaker]

What's the Rx and best corrected VA?

[MikeAurelius]

Take a look at the Hilco Rx Sun line. Lots of choices there and interchangeable inserts for 6 and 8 base lenses.

I've been having good luck with some hard to fit folks.

Good luck!

[eryn]

Erin's world (Specs 4 Us) frames are made for children with down syndrome who often have the same problem with the glasses sitting too far down. The bridge is set more toward the bottom which forces the lens up. They also are designed to grip well behind the ear. Might be worth looking at.

[Sledzinator]

+1 for Erin's world. We had a patient with downs syndrome bring one in the other day and it fit him much better than a standard frame.

[TEdFitz]

This sounds more like a moisture chamber-type frame than anything else...eyes very sensitive to sun or any and all circulating air due to chronic exposure. As far as the hearing aid prob, I'm assuming the kid has a behind-the-ear style...simple solution to HA and temple cooperation: those tiny rubberbands used on dental braces; joining HA tube to eyeglass temple.

[jpeaslee]

I don't have the RX on me. It was a walk in patient, he didn't see our docs. He is a OD +3.00, OS +4.00 (BCVA wasn't listed), first pair of glasses. We've had great luck with the Erin's world frames as well, but they still fit far too close to his eyes and the temples won't work. He has a mounted to a headband of some sort. The elastic band from the rec specs works great with it.

[rbaker]

If you have a frame which meets all fitting requirements except that it fits too close or at an inappropriate height go to your local hardware store an get yourself a tube of clear silicone rubber. Squish out a big wad on the bridge, let it set and then go at it with with a sharp exacto knife.Have the patient present for fitting (you might even be able to charge a few extra shekels for the procedure.) This is an optician skill that separates the men from the boys.

[MakeOptics]

If you have a frame which meets all fitting requirements except that it fits too close or at an inappropriate height go to your local hardware store an get yourself a tube of clear silicone rubber. Squish out a big wad on the bridge, let it set and then go at it with with a sharp exacto knife.Have the patient present for fitting (you might even be able to charge a few extra shekels for the procedure.) This is an optician skill that separates the men from the boys.

Wow.

[InsightOpt]

I've had success with Erin's World and some of the Nano Vista custom fit models (replacing the traditional temple for the headband) when fitting a unique case like this one.

[JuliaG]

I custom built out one of our plastic frames for a child with exophthalmos. He's only 8 months old right now, but he sure smile when he puts the frame on. The only issues we run into is that the glasses shift when he turns his head which is his way of getting them off. But his eyes protrude significantly so none of the nanos or other kids options work.