Lily's Story

"Your daughter has epilepsy, and those episodes you are seeing are called 'seizures.'" Those words are forever burnt into my soul. I was a new parent with a perfect life and a perfect partner, and this was my first child. How was this my new norm?  Full of optimism and hope, I thought it was a blip, something that would go away on its own and that we would get past. What I didn't realize at the time was that epilepsy is an extremely difficult condition to treat, and we spent the first few years in and out of hospitals. And we were not alone.  Approximately 30% of people diagnosed with epilepsy do not have their seizures controlled by pharmaceuticals.

Lily has suffered from multiple daily seizures since diagnosed with epilepsy in infancy. When first diagnosed she could have up to 50 seizures a day. For the first two years of her life she would have a seizure every twenty minutes during sleep. She didn't sleep for the first two years.  And neither did I. 

 Eight years and multiple neurologists later, we have failed several anti AEDs (anti epileptic drugs), CBD, diets, a vagas nerve stimulator, and Lily has been assessed to not be a candidate for brain surgery on three separate occasions.  We've had extensive genetic testing and analysis, including through the Melbourne Brain Centre, none of which identified any gene mutations that are known to cause epilepsy.

We found that ketosis through diet was initially effective at reducing her seizures, but that the ketogenic diet unfortunately has a short therapeutic benefit with Lily.  We next tried CBD, but it failed due to an interaction with her pharmaceuticals.  After diets , AEDs and CBD failed, we tried a vagas nerve stimulator (VNS), which is a device that is surgically implanted in the chest and connected to the vagus nerve, which in turn runs up the neck into the brain. The device can be set to regulate the electrical activity to the brain and interrupt the excitability that results in a seizure.  Unfortunately, VNS actually made her worse by changing her seizure-type into "drop seizures," and she ended up clustering having a seizure every eight minutes. We eventually turned it off and after a few months, saw her revert back and no longer have drop-seizures. 

Throughout this journey, we have had some triumphs. At a very early age, Lily received hippotherepy with the guidance of an occupational, physical or speech therapist.  Lily's daily seizures and her medication's side effects have caused significant developmental delays - especially with her speech. Over the years, we saw significant gains in cognitive function, physical strength and speech development because of the services she received.  Lily, to this day, continues to receive non-traditional forms of therapy in the form of surf and horse therapy. Surf therapy has been fabulous for her coordination, balance and core strength, as well as fostering her love of the ocean.  Unfortunately most insurance companies do not cover the cost of these services, so they are often out of reach for many families. 

In January 2019, Lily received her seizure-alert dog Babette through 4 Paws for Ability in Xenia, Ohio. Babette spent two years training to detect and alert to Lily's seizures. As a parent of a child with epilepsy, I prided myself that I was always there with Lily when she was having a seizure.  When Babette joined our family, however, I quickly realized that I was not detecting all of Lily's seizures.  In addition, on at least two occasions, Babette alerted to Lily's seizures, and I ran into the room to find Lily with all the color gone from her face and her lips blue.  Babette has truly saved Lily a few times, and I can not be more grateful for that gift. Seizure-alert dogs can give families peace of mind that there is someone else watching. Babette has not only improved Lily's quality of life but ours, as well.  We are able to leave Lily alone with Babette and have faith that Babette will bark to alert us when a seizure is occurring. I was never able to leave Lily alone prior to Babette, and I wish every family of a child with epilepsy could have a valuable team member with four paws like ours. 

In August 2021, I discovered a few small studies on the benefits of traditional culinery-medicinal mushrooms that are non-psychedelic. Two of these mushrooms are: (i) reishi, which certain studies have shown has anticonvulsant properties: and (ii) lion's mane, which certain studies have shown has the ability to create new neural pathways and repair nerve damage.  We understand that both of these mushrooms have been used in traditional Chinese medicine  for centuries.  For more information about these studies, see the "Learn more about mushrooms" tab of this website.  I decided to try the mushrooms myself to see if I could gauge any benefits. The first day I felt amazing - it felt like the trauma of living with epilepsy had been lifted, and I felt more centered and in control.  I then decided to give them to my husband, who also gave reports of calm, increased focus, better mood and more consistent energy.  Our initial thought was that these mushrooms would help Lily through the fog of side effects produced by her AEDs.  We had no expectation of these mushrooms giving her seizure control at the time.

Miraculously and immediately after taking these mushrooms, her seizures seemed to stop, and within days, three different therapists reported new goals or milestones Lily had achieved. She started talking in her sleep for the first time.  She was able to communicate her needs and initiate play.  She demonstrated improvements in her fine and gross motor skills. It was like we had found a key to a lock and she was free for the first time. Lily went 9 weeks seizure free.  Since beginning this mushroom treatment, Lily went from having multiple daily seizures (up to 50) to roughly a seizure every couple months.  Lily is currently taking, a mushroom powder blend and one AED.  We are hopeful and confident a mushroom-based therapeutic will help many others like Lily-Kate.

With your help, we can fund innovative studies, including those that could result in the development of a mushroom-based therapeutic, in order to  help families like ours that suffer from uncontrolled, "intractable" epilepsy. Please consider donating and getting involved!

UPDATE 28AUG2022  Lily is now on 400mg less of her Lamotrigine(AED) since starting mushrooms. Lily has always been on multiple medications at one time. being on mono therapy and the mushrooms has been life changing in improving her quality of life.