Ocularist vs. Oculoplastic Surgeon

[ourlittlepirate]

Hi everyone,

This is my first post, I have a 5 month old daughter who has bilateral microphthalmia (with bilateral colobomas as well.) When we originally found her diagnosis, we were sent from her ophthamologist to a geneticist to an oculoplastic surgeon to an Ocularist. I love, love, love our Ocularist and dd was fitted with her first Scleral shell last week and she is doing really well. What I can't understand is the purpose of the oculoplastic surgeon and whether or not I need to continue to take her there? If so, we need to find another one and I can't quite figure out how to do that. I'm hoping someone has "been there - done that" and can help me understand. Also, does anyone live in the Philadelphia, PA area and have an oculoplastic surgeon they are happy with?

Thank you so much for your help. I'm SO looking forward to connecting with everyone.

Chandra ~ Mommy to A (3.5y) and B (5m) with bilateral micro

[Jodi]

Hi Chandra and welcome to ican! My name is Jodi, I am currently the president of ican and my husband and I have two boys. The youngest, Wyatt, has SOX2 anophthalmia syndrome. I'm glad you found our website and I hope it will be helpful to you and your family. Wyatt saw an oculoplastic surgeon initially and he referred us to the ocularist. We stayed with the ocularist until he was having problems with Wyatt's conformers and then we went back to the oculoplastics. Did you ask the ocularist his opinion or did you ask the oculoplastic surgeon when he wanted to see you back? That might be a good start. Dr. Katowitz (sp?) is in Philly and comes highly recommended for micro/ano kids. He's actually spoke at a couple of ican conferences. Hope my post has helped you some.

Take Care!

Jodi

[ShaniNJ]

Hi, Chandra. Been there, done that!

I was wondering if you're new to Philly? If so, have you contacted the Children's Hospital of Philadelphia? Jodi mentioned Dr. Katowitz. James Katowitz (his son Bill is also an ophthalmologist), an oculoplastic surgeon at CHOP, is 1 of the world's top experts for anophthalmia & microphthalmia and a gentle, ego-less man. We started taking our son Hillel, born 10 weeks premature without a left eye, to him 1 month after he was released from the NICU. Although he treats his patients cooperatively with an ocularist (Joe LeGrand), oculoplastic surgeons do certain things that ocularists can't.

I'm not sure what treatment your baby has had, but an oculoplastic surgeon will want to do an MRI to see exactly what's going on in your baby's sockets. He or she will monitor growth of your baby's orbits, face, and head to assure facial symmetry. In Dr. Katowitz's case, he used a series of graduated (for size) hydrogel implants (which he inserts generally without stitches) to stretch Hillel's socket and lids. At 9 months of age, after the orbit was stretched enough, he performed dermis fat graft surgery, in which he transplanted a bit of fat from Hillel's rear into his socket, creating a nice 'pedestal' -- which will grow as he grows -- on which a scleral shell/prosthesis now sits. Although we've primarily seen an ocularist since then (about monthly), we follow up with the surgeon about every 3 months so he can monitor progress of the ocularist's treatment and make suggestions if necessary. A surgeon is also necessary if your daughter has other cosmetic issues related to her microphthalmia.

We live in northern NJ, only 10 minutes from Manhattan, and yet we've always sought treatment at CHOP because Dr. Katowitz represents the top of his field. If you want more info, the nurse practitioner in the ophthalmology dept. at CHOP, Ivy Kuhn, is incredibly helpful (and nice): 215-590-6273 or 215-514-2656.

You also mentioned seeing a geneticist. Since you're on this forum, you probably know about the Anophthalmia/Microphthalmia/Coloboma research project at Albert Einstein Med. Ctr. in Philly. If not, you should contact them to make sure your daughter is tested for the SOX2 mutation which Jodi mentioned (my son has it, too), a recently discovered cause of A/M that most geneticists don't know about and don't test for (see the 'Genetics' tab at the top of this page). It's something you'd want to know about for your daughter's sake (medical management) as well as for any other kids you might have and also any kids your daughter might have someday.

Good luck to you and your family and stay in touch. I also recommend the Yahoo Microphthalmia Group -- lots of members.

Shani