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  Incontinentia Pigmenti International Foundation


Recommended Specialists - Pediatric Ophthalmologist and/or Retinal Disease Specialist, Ophthalmologist

The IP eye exam is imperative to be completed as soon as possible once IP is known at birth or thereafter.


A dilated fundus exam as soon after birth as the Neonatologist or Anesthesiologist thinks is safe. Sometimes, if there are any suspected retinal abnormalities, an examination under anesthesia is required. The important thing is for the ophthalmologist to look at the optic nerve head, the macula (in the center of the retina), and the far peripheral retina, where the typical pathologic events tend to occur. This should be done before the babies leave the hospital. UNLESS there is a known allergy to fluorescein in the family or in the patient, a fluorescein angiogram is highly recommended, regardless of age, initially and at follow-up, and unless the retinal specialist decides the view of the retina is easily and completely obtainable without the angiogram. An angiogram is used to see the vessels located in the periphery of the eye where bleeding can occur and which CAN NOT be seen by the naked eye. Frequency of repeat angiograms is based on the retinal specialist’s interpretation of the retinal findings obtained with routine examination techniques.

Severe retinal disease is sometimes associated with brain dysfunction and is a marker to pursue x-ray scanning studies of the head. With respect to the eyes themselves, some babies with IP, and even some older patients, might benefit from laser treatment in an effort to prevent retinal detachment or vitreous hemorrhage from the consequences of the typical retinal neovascularization that occurs in this disorder.

If eyes are okay upon the initial full IP eye exam and thereafter - eye appointments with dilation follow-ups should be scheduled monthly until age four months; then approximately every three months or so from age four months to one year; every six months from age one to three years; and annually after age three years for life.

If an important issue or question should arise at anytime during an exam, immediately see a retinal specialist or pediatric ophthalmologist and refer back to the full IP Eye Examiner thereafter.

If any head trauma occurs at any time throughout life, an eye exam is highly suggested as soon as possible to rule out partial and full retinal detachment.

The majority of IP patients have normal vision. Some problems, like near - and far - sightedness, are common in IP, but these are probably no more frequent than in the general population without IP. The classical eye finding in IP is an abnormality in the growth of blood vessels in the inside of the eye (the retina). Growth of abnormal blood vessels and the associated scarring can cause loss of vision, but can be treated if recognized early enough. For this reason, babies diagnosed with IP should have the full IP eye examination immediately after birth and be followed by an ophthalmologist closely. Careful examination by a pediatric ophthalmologist or retinal disease specialist should be done.

Rare eye abnormalities have included small eye (microphthalmos), cataract, and degeneration of the optic nerve (optic atrophy). Permanent visual deficiency or total blindness may occur.

IP Eye Exams are "Medical Not Routine" for insurance purposes. If an adult with IP eye abnormalities should become pregnant please discuss this with your current eye doctor, as different means of delivery may be required for the safety of your eyesight. Dr. Goldberg has retired; however, he would like to offer his services to any patient who might benefit from ophthalmic consultation and/or advice. He is the author of several articles on this subject, which IPIF can send reprints of to those who are interested. Dr. Goldberg is also a member of the Scientific Advisory Council of the Incontinentia Pigmenti International Foundation.

Morton F. Goldberg M.D. Ophthalmologist with IP Expertise
Joseph E. Green Professor of Ophthalmology and
Director Emeritus, Wilmer Ophthalmological Institute Johns Hopkins University School of Medicine

Recommended by Dr. Goldberg

Connie Chen, M.D.
Virginia Mason Medical Center, Seattle, Washington
Tel: 206 223-6840

Ian C. Han, M.D.
Carver College of Medicine
University of Iowa, Iowa City, Iowa
Tel: 319 356-2852

James T. Handa, M.D.
Wilmer Eye Institute
Johns Hopkins University School of Medicine, Baltimore, Maryland
Tel: 410 955-3518

Adam S. Wenick, M.D.
Wilmer Eye Institute
Johns Hopkins University School of Medicine, Baltimore Maryland
Tel: 410 955-3518

Richard A. Lewis, M.D., M.S.
Professor, Departments of Ophthalmology, Medicine, Pediatrics, and Molecular and Human Genetics
Cullen Eye Institute
Baylor college of Medicine, Houston, Texas
Tel: 713 798-3030 Fax: 713 798-3042

Audina M. Berrocal, M.D.
Bascom Palmer Eye Institute
Miami, Fl.
Tel: 305 243-2020


John R. Ainsworth, M.D.
Department of Paediatric Ophthalmology
Birmingham Children's Hospital, Birmingham, United Kingdom
Tel: 1213339475

Professor Anthony Moore
Head of the Division of Inherited Eye Disease.
Moorfields Eye Hospital, London, United Kingdom
tel: 20 7405 9200

Eye Examination of Children Affected with IP


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