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658757 tn?1397796878

incontentia pigmenti

my youngest daughter who is 7 months old now, was diagnoised with ip, and has been on topamax ever since, but is now having sezuires, they have upped the dosage twice, but its not working. i am wondering if she is going to be ok, or iam i just watching her die?
2 Responses
Avatar universal
Hi

Incontinentia pigmenti type 2, is a rare, genetic disorder having skin pigmentation that often is associated with ocular, dental, and central nervous system abnormalities. Due to the multitude of abnormalities, it is wise to involve a team of doctors consisting of Ophthalmologist, dentist, genetist, dermatologist and a neurologist so that appropriate treatment can be given.
It is very important to have routine eye/checkups as there is a risk of serious eye damage. Treatments such as glasses, photocoagulation or Vitreoretinal surgery for retinal detachments may b required. Meticulous dental care is also required for the patient.

Take care and do write in if you need more information.
Regards

658757 tn?1397796878
we have all those doctors for her. i also have another question for you. we have been told that she has intractactable sezuires. is there a medicine that will stop these? she is currently on klonipin, zonagran, and vitaminb6. or do the medications that she is taking going to make her worse?
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