Incontinentia Pigmenti Community
Our son has IP
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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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Our son has IP

Our son was born with a rash on his leg, the doctors immediately diagnosed him with IP and took a biopsy and his blood for a DNA investigation. Now we know that he has XY and not XXY but they still investigate his blood for another mutations. In a meanwhile we have results of his biopsy which confirms the IP diagnose. I know it`s almost impossible for a boy to be born with IP. There is noone in our family who has IP and I never had miscarriages, we also have another son who is healthy. Also his rash is not going through all the stages, it`s just one day red and another day completely gone, then it comes back. Is it a normal behavior of the IP rash? The doctors say that if there is nothing strange found in his DNA then they can`t predicts the consequenses of IP for our son due to some unique genetic mutation.
I`m freaking out to know that it can cause neurological and other problems and even more that we don`t know what will be wrong. Would love to talk to anyone with the same diagnose who shares the same problems.
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What I also wanted to ask is if the amount of this rash proportional to health problems? I mean the more rash there is the more chance to have other disorders or can just few spots cause much problems as well?
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