When my daughter was a few days old she started having seizures, they gave her an MRI and found blood clots in her brain. The doctors put her on blood thinner and seizure medicine. A week later she develop a rash and blisters, the dermatologist diagnosed her with IP. Are the blood clots in her brain related to the IP? Will she have a blood clot disorder, and will they continue to come back? Where are the seizures coming from, the blood clots or the IP? Will she always have seizures? I have asked these questions to her doctors and they have no answers, they keep telling me I have to wait and see what happens. Please if anyone has any information I would be very grateful.
One more thing....
My daughter has seen the eye doctor and he told me she has abnormal blood vessels. He said we have to do a follow up to see if they have changed. From my research I have found there is a connection with the eyes and the brain. How will I know what her mental capacity will be in the future?
hey there so sorry to hear the news your girl has ip my bub does as well . to answer your questions i am no doctor but i think it all sounds like ip i dont think there is any way to find out there mental capacity unfortuantly its just wait and see the only other peice of info i can give you is i found that a genetic specialist can shed lots of light on the situation best of luck
I am the Executive director of the IP foundation. I will try to answer some of your questions.
It is not unusual for a baby with IP to have seizures, and kyou should consult a Pediatric Neurologist. As for the eyes it is also not unusual for there to be eye problems. For this you should visit a Pediatric Ophthalmologist. A description of how to examine the keys of a baby born with IP is on the web site. www.ipif.org. How long any of these symptoms will last is very difficult to determine. Has your daughter had a genetic test to confirm the diagnosis? Neurological problems are also a possibility with IP, but first confirm that she does have IP. IF you wish contact me firectly at ***@****.
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