My Perspective: Growing Up With PCDH19 Epilepsy

Many people think that having a seizure disorder like PCDH19 merely means that you occasionally have seizures. However, the reality is that such a disorder is often accompanied by many other challenges such as sensory issues, psychological problems, and other health issues.

Moreover, when you are taking a lot of medications, there are many side effects posing even more health issues. For example, some medications are attributed to liver damage or cause you to gain weight. Other medications can give you constipation to the point that you never want to eat. Then you can have meds that cause you to throw up or to never be hungry. After being on these meds I lost my gallbladder at 17. To this day, over a decade later, I still have times where I am dealing with this.

Going through puberty can change the life of someone living with PCDH19. Some girls like my sister quit having seizures as they go through puberty. Others like myself have an increase in seizures. As you add estrogen to a brain that already is having problems, you can have a lot more seizures. For me, I had a seizure every time I ovulated. I would also have severe migraines. For many people with PCDH19 who have autism they will have an outburst. As a teenager I will never forget having the seizure out on my run during cross country practice. I woke up scared and ran back to school. I tried to tell the football coach but he couldn’t understand me and would say, “Just tell me what is wrong”.

Now, as an adult and as a parent of a girl with PCDH19 going through puberty I have heard every diagnosis out there for what is causing it. It is my personal belief that the outbursts happen due to hormones and is horrible until hormone therapy is figured out.

Sensory issues are things that people with PCDH19 regularly deal with. Personally I am sensitive to sounds and light. I remember teachers who wanted to flash the lights on and off and it caused me to have seizures. My sister was so sensitive to touch that she could not stand the feel of soap on her body. One of my teachers once told me to “just get over it”, and my classmates would say, “Quit being a party pooper.” Being sensitive to these things made people regularly get upset with me, and it was not like I could do something about my sensitivities.

Psychological issues are really common for many with PCDH19. When you have lost control of your body without choosing to, it is scary. Many people with PCDH19 have different sensations prior to the seizure. For me, I could feel the seizure coming and would try and tell someone, but no one would listen because they couldn’t hear (the problem was that the seizure started in my temporal lobe, so I was unable to speak about it). Many people with PCDH19 have anxiety, bi-polar or other psychological issues. Many people will try to tell us parents, “You just did not train your child enough.” These people have no idea what parents or those with PCDH19 are going through on a regular basis.