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Bilateral Nodular Previntricular Heterotopia
Wed, 01/10/2018 - 14:50Topic: Living With Epilepsy - Youth
I was 5 months pregnant with my daughter Baileigh, when she was Diagnosed with BNPH, she started having grandmal seizures at 3 months old, she is now losing eyes sight and had a stroke 1 week before her 7th Birthday, she just turned 13 on Jan 8 2018, she has a lot of anger issues, and sometimes thinks she is still a baby! Of course I’ve spoiled her and babied her over the years! But that’s because I don’t know what to expect from her having this rare disability, she was born with the connector missing that connects left side of Brain to the right, and the grey matter not where it should be, if there is any financial help out there for single parents please let me know! I am from Canada! Also what is the life expectancy of a child with BNPH?
Does BNPH always come with
Submitted by Amy Jo on Fri, 2018-01-12 - 12:35
Does BNPH always come with agenesis of the corpus callosum? It sounds like there is a lot of variability ( https://ghr.nlm.nih.gov/condition/periventricular-heterotopia#definition ), have you gone through genetic counseling and consulted specialists about the range of possible issues facing your child? This is such an unusual situation, I don't think you'll get good info here. Have you gotten some neuropsych testing done? I would suggest that might identify some approaches that would work better for your daughter and help you have a realistic understanding of what her potentials are so you can help her grow into her best self.