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 medications to give when and at what point to go to the hospital. We have a whole system down. Seizure clusters are still terrifying and exhausting ordeals for everyone involved but at this point we understand how to react. The behavior issues we face regularly are not so clear cut.
keep reading this post and more from Le at the PCDH19 Alliance blog