Surviving the Hard Days

This week researchers from University California San Francisco and Boston Children's Hospital released a study based on data from the PCDH19 registry . The researchers looked at several areas of our kids lives to see how they are impacted by the disorder. They found that seizure clusters are still the hallmark of PCDH19 and sleep issues are common, as are intellectual disabilities. They also discussed the behavioral challenges that many of our kids face and noted that for lots of parents these are more of a struggle than the seizures. This is definitely true in my house. When we are faced with seizures, I know exactly what to do. I have a protocol from her doctors explaining what medicati

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The PCDH19 Alliance is a registered non-profit by the Internal Revenue Service under Section 501 (c)(3). We are 100% volunteer run. All the funds we raise go directly to funding research, supporting families, raising awareness, and finding a cure.

Copyright 2019 PCDH19 Alliance

926 A #212 Diablo Ave, Novato, CA 94947

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