Saturday, 12 April 2014


Kylie is 5 years old; she was diagnosed with IP at 2months of age. At first when she was born here in New Jersey they said she just had a typical new born rash but then as I was being discharged even though the rash was still presentable. They explained to follow up with her primary doctor in 2 weeks which I did. He then explained it was some type of rash & prescribed her an ointment cream with no luck. He referred me to an infections specialist because he thought it was an infection. She was admitted and they ran a few blood test with nothing out the ordinary so they discharged her with yet another prescribed medication cream & instructions to be really sterile with her because her skin was really sensitive. Her rash still did not go away and her blisters where still there. I was afraid so I went back to her Primary care & he then sent me to see a dermatologist where they also did not understand what the problem was. I went to 3 pediatric dermatologist & no luck until one of the dermatologist told me real blunt. He said, “Honestly I am not sure. I have a friend who specializes in children and she is the head doctor on the specialty group of NYU Langone Skin & Cancer unit in New York City”. 
I remember this day as if it was yesterday. There was a snow storm coming and it was 2days before Xmas but I was desperate. So he asked me if he could get a hold of her would I travel to NYC so she could see my baby. Of course I sure did immediately! 
She was waiting for me in the ER unit. He explained to her in advance about my baby’s symptoms & according to her she said she knew right away Kylie had IP! As soon as she examined her she told me I know what your child has & there is not a cure with any medications. She has a rare disease and she said she would confirm it with a biopsy. Sure enough she was correct. My journey with her from that day started. I now had answers & I now knew that all those other prescriptions given to me by other doctors would not help or didn't because she did not just have a typical rash. 
No one in the Jersey area knew anything nor had any knowledge of Incontinentia Pigmenti. Her name is Dr. Julia Schaeefer in New York University Langone Hospital. Kylie has been her patient since she was 2months old & sees her yearly now. Kylie followed up with her for the first 3 years of her life every 6months. Now that she is getting older she goes every year for a follow up. 
At this time on top of having a dermatologist she also has a few other specialists that she sees. An endocrinologist who explained that she does fall off her growth chart but it is nothing major to worry about. A cardiologist who said everything now is normal but she does have a small murmur. A dentist who explained her cone shape teeth are because of the IP which I expected because her doctor made me aware of that. She has problems with hair patches, but as of now I Thank God that she is doing well & I have faith in my Lord because she will overcome this. 
I wanted to explain to those not every child who has IP suffer the severe effects that come along with this condition, some are minor than others & soon it will get better in time, & don't loose faith. All these trials only make our IP Angels special 
Thank You, Cheryl Torres

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