you should start with speaking to your pediatrician. You need a neurologist , a dermatologist and an eye doctor to start with.
Hopefully they can refer you to some doctors in your area. Good luck and if you need to talk, feel free to send me a message.
You will need the best Neurologist and opthomologist you can find. Look up NORD, it is the most reliable info.....these little ones have retinal hemorrages which lead to blindness, seizures, and numerous other problems that often require physical therapy and very close monitoring for years.....they also frequently don't have normal immune systems. I have raised one daughter with IP and am watching the rest of my children very closely...My mother had 14 miscaraiges and only one surviving child, I was lucky and only lost one child, we did not know about ip until after our last child was born with the skin lesions....it took 3 months to find a diagnosis....and it was finally a dermatologist that told us what it was...the pediatricians told me I was an over protective mother! If you need help finding a dr that specializes in this disease... you need to start with Genetics....they will refer you to the neuro, and opthomologist and the rest.
you can contact me if you would like more information....I now have a grandaughter with this disease also.
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