There are a lot of parents actually on here looking for the same support. I do hope other parents reach out to you here. How has your daughter been?
My Grand Daughter Jolie was diagnosised with IP shortly after her birth 1/21/2012 because of her mother's persistance. Jennifer knew it was not just a regular newborn rash & it wasn't herpez either. She found the information on IP and printed it and took it to Jolie's MD, who then sent her to another specialist. The biopsy confirmed IP, unfortunately Jennifer who is also a RN knows more about IP than any of the MD's that have seen Jolie. You are going to have to be your daugher's advocate. If she is having any developmental delays she should qualify for some type of Early Childhood Intervention, the diagnosis of IP will qualify her for State and Federal Help. The Internet is an amazing tool to help you find information and resources and connect with others that are going through similar problems such as this IP Community. Check out the IPIF Foundation ******** (I think) You are going to have to be the Expert, just remember that "Knowledge is Power!!!" God Bless :)
Nina, I hope your granddaughter is doing well. I am also a grandmother with a granddaughter with IP and she is 3 years old. We have learned a lot about it in the past three years. My daughter and son-in-law has been taking her to the Ophthalmologist every six months, her Pediatrician on a scheduled bases and to the Dentist. This is to document if any changes that may occurred. She is a very bright child. Her hair is a little thin but nothing a cute hair style want take care of. Some of her teeth are missing for her age and her finger nails are thickened and yellow tint. We are now looking for how other people have handled these issues. If anyone has any knowledge please let us grandmothers and mothers know.
Nina, you are right there is little to no information out there for us to help these precious children. Please keep me posted on your granddaughter.