Lauren's Journey with Epilepsy

This page is to share Lauren's journey, and ours as a family with Epilepsy. I began this page for my daughter Lauren and her journey with Epilepsy.

I'm also hoping to chronicle our journey as a family and bring awareness and education to a condition that is often misunderstood. I also hope to educate others on our decision to try and wean Lauren off some or all of her medications and try Medical Cannabis. Sometimes these medications and their side effects are worse than the seizures themselves and Medical Cannabis may help. I know we will hav

e our critics but I want this to be a positive place for education on both MMJ and Epilepsy. At the age of 3 Lauren was diagnosed with Absence Seizures. For other reasons she had to have an EEG and her reading came back abnormal. The Doctor decided at this point not to medicate from an abnormal reading since we had not seen these seizures occur. This type of seizure is now called Petit Mal. Years went by with no issues. When she was twelve years old we began noticing the physical apperance of these seizures. Blank face staring, and eye rolling. This is when we decided to medicate. The reasons being, she would lose moments of time during class, which could affect her learning, or she could fall down and hurt herself if these occurred while riding a bike or walking down stairs. We went almost two years very controlled. She was doing well in school and was enjoying her friends and playing basketball and volleyball. Last year though things changed. Late November 2012, Lauren had her first, of what would be many, Tonic Clonic seizures, also known at Grand Mal. We were all stunned and baffled by the sudden change. Doctors did what they thought they should do and added more medications to control the seizures, which were happening now every 3 to 4 days. Her highest point was 5 meds. Currently Lauren is on 4 medications. We have had some good months with no Tonic Clonic seizures, but occasionaly get the Petit Mal. This comes at a high price though, with all the side effects of all the meds. Over the past year our family has had to become accustomed to our "New Normal" and Lauren's. Because of all the side effects from the 4 different medications Lauren has had to stop going to school. First of all they make her very tired. She sleeps most of her day. We have learned the term "dumb down" and thats just what these meds do. She can't think or remember things like she used to. She lost her taste for food and at times they can make her very irritable. Life had changed. We are parent's and a family that are concerned and want to see their daughter and sister return to her life. We have listened to the Doctors and do what they suggest, but with no real definite path. This past year I have made it my mission to become more educated about Epilepsy and about all these drugs and become a strong advocate for not only Lauren but my family and others out there. There is strong evidence, maybe not through medical studies, but through families dealing with far worse situations than us, that have found success with Cannabis. We are fighting to start that journey ourselves and hopefully give Lauren some of her life back.

11/30/2025

Lauren’s Photography Page! 📸🏀🏈⚾️⚽️🥎🏐

Lauren Mannikko (@laurenmannikko.photography) • Instagram photos and videos 151 Followers, 183 Following, 35 Posts - See Instagram photos and videos from Lauren Mannikko (.photography)

11/30/2025

Today is the last day of Epilepsy Awareness Month but that doesn’t mean it stops for us. Around 50 million people have Epilepsy worldwide. 1 in 10 will have a seizure and 1 in 26 will develop Epilepsy in their lifetime.

Lauren has a genetic form of Epilepsy called PCDH19. PCDH19 is a gene located on the X chromosome. This protein helps neurons connect and communicate with each other. Mutations or changes in the PCDH19 gene lead to a spectrum of neurological disorders, most notably a type of epilepsy.

Thankfully, after some rough times, Lauren’s epilepsy has been controlled by medication. It was a lot of trial and error, and finding the right Doctor but we are grateful to be at this place

Where is this place? Lauren is living independently in an apartment with one of her sisters, focusing on photography. Specifically sports photography, which she loves. Any sport she loves it, but I’d say she’s partial to football and basketball. Her seizures are controlled, her last one being about 9 months ago. That was a lesson she had to learn about the importance of taking meds on time, and not forgetting a dose. Before that we had gone about 5 years. We aim for that again.

Lauren has had to go through a lot of disappointment in her life with having Epilepsy but she has never let it keep her down. Side effects from the meds can be the biggest struggle. They aren’t something you can physically see, so it can be hard for some to understand. Judgements can be made.
I think that’s where the saying of “Be Kind, you never know what someone is going through” is a good reminder for us all.

Thank you for taking the time to read, and for learning about Epilepsy.

12/25/2024

Merry Christmas! Wishing you and your family and Safe and Seizure free Holiday Season! 💜🎄🎁

Our adaptive program provides children with special needs with more than just the chance to get on the snow. Our program's volunteer instructors also teach parents the skills needed to ski together as a family for a lifetime.

This Thanksgiving, we honor the heart of Sky Tavern - the volunteers who contribute tirelessly to each smile made on the mountain.

#skytavern #kidsoutside #adaptiveathlete #adaptive #adaptivesports #skitahoe #juniorski #laketahoe #reno #inclusive #Family #community #nonprofit

11/29/2024

An amazing program to include everyone!💜Sky Tavern Thank You! Jimmy's Journeyy

Our adaptive program provides children with special needs with more than just the chance to get on the snow. Our program's volunteer instructors also teach parents the skills needed to ski together as a family for a lifetime. This Thanksgiving, we honor the heart of Sky Tavern - the volunteers who contribute tirelessly to each smile made on the mountain. #skytavern #kidsoutside #adaptiveathlete #adaptive #adaptivesports #skitahoe #juniorski #laketahoe #reno #inclusive #Family #community #nonprofit

11/25/2024

Epilepsy involves the whole family. I’m lucky to have 3 sisters that support me. I know they have been affected by Epilepsy as well. 💜

11/15/2024

Do You Know the Cause of Your Epilepsy:💜

I do know the cause of my Epilepsy, a genetic form. It is caused by a change or mutation of the PCDH19 gene found on the X chromosome. The PCDH19 gene makes a protein (called protocadherin 19) which helps cells in the brain communicate. PCDH19 is not the name of a medical condition but is rather the name of the gene that is affected. When epilepsy is traced back to a disease-causing (pathogenic) variant in the PCDH19 gene, it is called PCDH19-epilepsy

PCDH19 Alliance The Epilepsy Network (TEN)