Hi there my daughter who is 4 was diagnosed with IP @ birth! I live in in Winnipeg, Manitoba and just wondering if anyone else in Manitoba is dealing with this disorder & who they go & see? No one seems to know anything about this disease! Please help if you can :)
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.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.