My daughter has incontinentia pigmenti and we need some up to date knowledge of the condition, how this will effect her when she wants children etc
Yes, retinal detatchment and seizures are some of the symptoms of IP. I would recommend your mom letting the docs know that she has IP because they would be able to monitor her eyes and brain. I know another mom whos daughter has had a terrible time with her eyes. At the very least encourage her to get regular check ups with an eye specialist.
This is something we are going through right now with our mother. She has had some eye problems, but our biggest issue is she keeps having mini seizures. They keep saying they don't know what is going on, but we are going to present this to them today. Have you been able to find any other information on this? This also concerns me because my sister and I also have incontinentia pigmenti.
Were there any developments on your mom's case? I have IP and we believe my mom has it too, too many symptoms that make sense. My mother had retinal detachment at around the age of 30 too. I am 25 and started having floaters in my eye. I am freaking out and looking to go see a doctor as soon as possible. I do believe there is a connection but like you said, everyone always talk about their children with IP. How about us adults? any thoughts?
If you have IP, then your mother HAS to have it. That said, I found out in my 40s that my mom had to have had IP. This is because my great-niece has it. Don't panic. Inform your doctor of the condition, and bring information about it with you to your appt.
As to floaties, I would sincerely not panic. I think they are quite common, and not solely due to IP. Get annual eye exams, and make sure that doctor knows about the possibility of eye complications. He/she may refer you for further exams.
Actually, about 50% of IP case are spontaneous mutations, so it is possible for someone to have it and there mother not to have it. I am a spontaneous mutation.
I waz born with IP in 1975 iam in a medical book with it I blind in one eye n did have misshaped teeth out do have daughter with it to she didn't walk till she was 4 years old
your daughter didn't walk till she was 4 years old because of the ip? Did you have a lot of the rash and discolored skin as a baby? My daughter is 6.5 months old and has only had a small rash a few times but she has no teeth yet which is concerning....
Hi i have IP and im currently 19 i have a little girl that is not effected at all and she is also 3 still no signs i had serve dyslexia when i was little but found that from trying unusual learning techniques i cached up rather fast. My mum was told id have mental issues which i did but not to the existent of what they said nd that id suffer with seizures which i did for the first year i have missing teeth but not noticeable as they don't look like they were supposed to be there anyways and my eyes were till bout three years ago deteriorating constantly but aince seeing an eye specialist about IP and getting correct glasses they have stayed the same x
