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Frequently Asked Questions

What doctors & specialists do I need to take my child with PCDH19 to see?


Every individual with PCDH19 has unique needs & therefore requires different specialists. However, for most patients a multidisciplinary team is needed to meet all needs. It is worth looking into the following, potentially at different stages of your child’s development: -Neurologist (specializes in epilepsy) -Neuropsychologist (can provide patients with a neuropsychological evaluation to give insight on how different areas of the brain are functioning) -Occupational Therapist (specializes in daily living skills & sensory needs) -Speech Therapist (specializes in speech and language development) -Physical Therapist (specializes in fine & gross motor skills) -Applied Behavior Analysis (ABA) Therapist (specializes in behavioral support & teaching of daily living skills for kids/adults with Autism) -If you think your child may have an additional diagnosis of Autism which is fairly common in PCDH19 Epilepsy, you should reach out to your pediatrician or neurologist for guidance & a possible referral to the appropriate specialist in your area.




What medical equipment & adaptive items do families with a child with PCDH19 find helpful?


Nighttime Monitoring Device - Pulse Oximeter -Insurance may cover the cost of a Pulse Oximeter & this potential need should be discussed with your neurologist. Our Scientific Advisory Board’s Statement Regarding Pulse Oximetry & PCDH19 can be found here. This may be helpful to share with your doctor. Adaptive Strollers/Chairs -Convaid Cruiser Stroller -Hoggi Bingo Evolution -Transport Chair Medical Bracelets -MyID -HEALTHiD




Where can I find PCDH19 Alliance Merchandise?


Occasionally we have merchandise fundraisers with new designs, but our standard design merchandise can be purchased on Zazzle.




How do I explain my child’s epilepsy to their classmates & siblings?


Books are a great way to open the conversation about epilepsy at an age-appropriate level. The books below have been recommended by others in our PCDH19 community. -Taking Seizure Disorders to School -Isla and Lulu -The Great Katie Kate Explains Epilepsy -The Adventures of Oskar: Oskar’s New School -Becky the Brave- A Story about Epilepsy -MediKidz Explains Epilepsy




My child is really struggling behaviorally- what do I do?


Challenging behaviors are common in PCDH19 for various reasons including comorbid psychiatric disorders, side effects from medication for seizure control, as well as general frustration from difficulty communicating or getting needs met. The Alliance cannot give medical advice. However, from experience throughout our PCDH19 community, if your child is struggling with behavior you may want to ask your doctor about medication options to help with behavior, as well as ask if seizure medications they are currently on may have side effects that worsen behavior. Beyond medications, many families have found that getting ABA therapy for their child(ren) have helped with behavioral difficulties. Having your child see a therapist or child psychologist who specializes in your child’s needs has also proven effective for many families.




I’ve seen other families with PCDH19 have a service dog- could this be right for my family?


Many families have had great success having seizure dogs for seizure alert & response, as well as emotional support. However, having a service dog is a big commitment and some families have found that the extra responsibility has been challenging. If you are interested in learning more about this possibility for your family, you can reach out to the following (or other) organizations: -4 Paws for Ability -Canine Assistants -Good Dog Service Canines




What are some good questions for me to ask my doctor at my first visit?


Along with other questions personalized to your child's needs, you may consider asking your doctor the following questions: -What other therapists/specialists should my child see? -What do I do if my child throws up medication? -What happens when I send my child to school? -What is a Seizure Action Plan & do I need one? (You can learn more about Seizure Action Plans & their importance here). -What is SUDEP (Sudden Unexplained Death in Epilepsy) & how can I reduce the risk for my child?




I’ve heard of Seizure Action Plans- what are they?


According to the Seizure Action Plan Coalition, “a Seizure Action Plan (SAP) contains tailored guidelines on how to respond during a seizure, based on the patient’s medical history. It includes health and medical information specific to the patient and helps others recognize seizures and the appropriate steps to take to keep him or her safe from injury or damage caused by prolonged seizures.” You can learn more about Seizure Action Plans & their importance here.