Hi my daughter was diagnosed with IP at 2 weeks old, she is now 8 weeks. She had the blisters the day after she was born and all the doctors dismissed it as a severe newborn rash.. it covered most of her body. When she was 5 days old she started twitching and it looked so strange I called the doctor and he said it sounded like seizures and to go to the local ER from there we were sent to the childrens hospital where they did a skin biopsy and a week later called about the diagnosis. Noone in either sides of our families have ever had IP and I was wondering if the seizures point to a higher chance of her having brain issues? So far she has had an eeg at 5 days old and it was normal and we go back in may to get rechecked but i just wanted to kind of prepare myself and to see if the seizures mean anything in the long run.. most of the sites I have looked at most people do not have them. Any advise would be appricated. thanks
IP is inherited as an X linked dominant trait and is mostly inherited from the mother. While a few women may present with the condition as clinical cases, in others it may run in the germline as mosaicism and may not present clinically; though it can be passed on the child. The seizures described could be linked to the IP or could occur due to other reasons such as low blood sugar, electrolyte abnormalities etc. and it would be too premature to comment if this would be an early neurological sign. I would suggest discussing the situation and the expected prognosis in detail with a geneticist.
Hope the information is helpful.
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