my 5 mount old has retina detachment

my 5 mounth old was diagnosised with norrie disease...after 2 blood test they came back nagative..now they dont know what he has...he has had 4 surgeries two were bilateral victrectomy,,the other two were for glaucoma implants..now they say he has detachment of the retina in both eyes and there is nothing they can do...my ? is were can i go to get him help....were is the best place in the world to figure out what my baby has and to help him...im in ohio...and im think of going to the schepens retina associates fountdation in boston,ma...does any one know about this places and is there any better places to go....thanks for any help at all

[John C Hagan III, MD, FACS, FAAO]

Depending on where you live there are many fine world class tertiary eye centers these are on everyone's short list of world excellence:

Wilmer Eye Institute of John Hopkins University medical school
Bascom Palmer Eye Institute, U of Miami,  in Miami, FL
Emory University, Department of Ophthalmology, Atlanta GA
University of Iowa
University of Pittsberg has a long history of pediatric excellence and did most of the first studies on intraocular lens in infants and children.
Wills Eye Institute in Philadelphia
Estelle Doheny Eye Institute, California

There are many more where people from all over the world go to seek difficult treatment or difficult diagnoses. Good luck to your family.

JCH IIII MD

[darthhinde]

have you ever heard of schepens retina associates foundation in boston,,ma........just wondering if they were any good...i live in ohio and my son has been going to the cleveland clinic...but they seem like they gave up on him

[John C Hagan III, MD, FACS, FAAO]

Yes the Schepens Retina Associates are world famous also. Dr. Schapens, now deceased, was the father of modern retina surgery in the USA.  

JCH III MD

[darthhinde]

thank you

[darthhinde]

sorry to bother you..but have you every heard of john sears ophthalmologist from the cleveland clinc...sould i trust his word....what im saying is he swear my son had this norrie diease but two blood test came back nagative...from what i understand from him is when the retina is detached you cant retach it....but from all the reading i have been doing it sounds like it can be reatchated...but it seems like the retina have been detached for about a mounth now does that hurt the possibilty of reatachment?..should i seak a second opion?i realy need some help here i feel like im fighting the clock here....what would you do ....thanks

[John C Hagan III, MD, FACS, FAAO]

I do not know Dr. Sears but any ophthalmologist at Cleveland CLinic is going to be something really special in what they do. I do believe it is worth it to get a second opinion but I think it's not likely to to identify anything that can be treated. Second opinions are important so that you always feel you did everything you could to restore your child's vision.

You might ask Dr. Sears for a referral outside the Cleveland Clinic or go to any of the world class eye centers I listed.

JCH III MD