Incontinentia Pigmenti Community
IP diagnosed 2012
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This patient support community is for discussions relating to incontinentia pigmenti, genetics, and breast, dental, eye, hair, nail, nervous system and skin problems.

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IP diagnosed 2012

I never heard of IP until 2012 when my 10 yr old daughter had to go see a Cranifacial Clinic at the local Children's Hospital in British Columbia. When she was born at 29+ wks gestation genetics saw her but didn't give any diagnoses as to why she had some deformities in her hands and feet. I ate healthy, didn't smoke, drink or do drugs. When she was 4 wks old she had developed necrotizing entercolitis and had to have emergency surgery. I started to notice when she was about 3 yrs old that she had some white lines in her skin but wasn't too concern, thought that she had somehow scratched herself or did something so she didn't tan in a couple certain areas. Her pediatrician when he saw it wasn't concerned about the marks, saying it "it just happens." Now that she has had a total of 13 different surgeries and has a few more upcoming ones, it makes me concern. Should I worry about IP as well? She has ADHD as well as a complex learning disability.
351246_tn?1379685732
Hi!
I am sorry to hear about your daughter. However, usually wart like lesions of Incontinentia Pigmenti appear after a few weeks or months of life and disappear over the next few weeks and months. This is followed by hyper-pigmented streaks which disappear by adolescence. Thereafter atrophic and hypo-pigmented lesions develop. These lesions are usually accompanied by dental and visual problems along with seizures if there is brain involvement. If your daughter showed scratch like marks or hypopigmented areas around 3 years of life, it is less likely to be IP. However, please discuss with her treating doctors to be sure. Maybe she has dry skin or an itch. Take care!

The medical advice given should not be considered a substitute for medical care provided by a doctor who can examine you. The advice may not be completely correct for you as the doctor cannot examine you and does not know your complete medical history. Hence this reply to your post should only be considered as a guiding line and you must consult your doctor at the earliest for your medical problem.
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