Retinal Lattice Degeneration in 3 Year Old

[NYWalsh]

My daughter, 3 years old, was just diagnosed with retinal lattice degeneration in both eyes.  She received laser treatment on some of the holes in the right eye.  My son, 8 years old, is just recovering from his retinal detachment surgery done in February.  I have 2 other children---ages 2 and 7 months.  I live in the New York area and am looking for any leads to a pediatric retinal specialist and/or facility on the east coast.  I have heard that not too many doctors will want to get involved with a high risk patient such as my 3 year old daughter.  I would like to find someone who will take an interest in my family's history and progressively treat all of my children...and ultimately myself.  I too had a retinal detachment at age 8.  Thanks in advance.

[John C Hagan III, MD, FACS]

The response from forum members is very helpful and should answer your questions and point you in the right direction.

JCH II MD

[AnnaE]

Hi, I am a community leader here not a doctor. I have a lot of experience helping eye patients including myself. Welcome to our community.

There is Mass Eye at Harvard, but I am sure you want something closer. I have wondered about Columbia; good [ublication come put of there. Bascom Palmer in Florida is called the best by some. You could choose to search by doctor on Castle-Connelly.com, for a small fee. I think that's the best choice--searching by doctor.


My daughter detached at 18--both eyes. She is fine. I detached much later. One eye has lost 80% vision; the other eye is latticed. I had complications. This evening, I was going to look up the hereditary factors.


There is Mass Eye at Harvard, but I am sure you want something closer. I have wondered about Columbia; good [ublication come put of there. Bascom Palmer in Florida is called the best by some. You could choose to search by doctor on Castle-Connelly.com, for a small fee.

Dr. Hagan could post more suggestions. He knows a lot of doctors, of course.

Write back anytime.

[AnnaE]

I forgot to express that I am sorry that you have to worry about your children,s vision. I have only one child, and the sadness and anger, when her retinas detached, was overwhelming. No one had told me that she was at risk.At least her doctor caught it on a regular checkup.

I can only imagine the concern you must have. I hope you find an excellent doctor for them and for you, also.

[distracting]

I would try Shepens in Boston (http://www.schepens.com) and Mass Eye and Ear (identified above), New England Eye Center (www.neec.com) , and OCB Boston (www.eyeboston.com). You can possible see a few in a couple of days visit if planned well.

I have seen Retina specialists and NEEC and OCB and have been impressed with both. MEEI may be a good bet for pediatric help as well.

Good luck and god bless.

[AnnaE]

I am still thinking where I might go. I will choose by doctor, but is Columbia a good place?

[John C Hagan III, MD, FACS]

I know nothing about Columbia Unversity other than that the head of that university is a fool.

JCH III MD

[AnnaE]

OK. Maybe Columbia is not good.
I think the Castle-Connelly search would be good for finding someone close. If you want to talk more about clinics, write back.

[John C Hagan III, MD, FACS]

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