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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?
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?
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
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
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