Thanks for the invitation to connect. My daughter, Siena, has IP (as do I - both positive genetic tests from Baylor) and she is now almost 18mo old and so far, only issue has been her rash but it is so good to find someone else so close by going through the same stuff as us. I am currently 16wks pregnant, with a boy. We had the CVS but the direct results were inconclusive, so now we have up to another 2.5 weeks to get the final cultured results to learn if this little guy has IP too.
Our daughter was four in August. It sounds as if your route has been similar. El was not "diagnosed" with a specific disorder until she was close to one year-old. She, like I have mentioned, had seizures at 2 days. She does have the classic swirly pigment on her trunk, ears thighs and back. She had CVI when she was younger, and she lost vision in her right eye due to the aggrevated blood vessel growth of IP. Her CVI and delayed visual maturation are less of an issue. She has a visual field loss. Left side hemi, global delay, did not get teeth till 18 months and missing many, just started to walk this summer. LOTS of therapy with great people AND all that love has not hurt. Write anytime. I am happy to provide information from our own trials, support and contact info.
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