LILY

blogLily

 

LILY

Lily’s seizures started when she was 6 months old. We took Lily in for her 6 month vaccinations and that evening while I was rocking her to sleep she started shaking her head back and forth. The next day we started to see her pupils go down, a sunrise set pupil and we thought this was so odd. I made an appointment with a pediatrician and showed him what she was doing and he said she was just looking down. I was relieved to hear that but deep down still hesitant and concerned. The next month Lily was having tubes placed and I showed it to her ENT surgeon and she said I was over reacting and she was only looking down. So the next day I made another appointment with a pediatrician because her pupils were going down more and more and she was zoning out and we couldn’t get her attention or get her to snap out of her zoning episodes. This pediatrician also said it was nothing. Knowing in my gut something was wrong I made another appointment with a different pediatrician and took Lily in again. This time the pediatrician saw exactly what I was seeing and agreed something wasn’t right. She ordered an EEG and that’s when our epilepsy journey began. Her EEG was continuos spike and wave patterns and she was having seizures this whole time. We were referred to a neurologist and he took the time to walk down to the resident that listened to me and thanked her for listening because she probably saved Lily’s life. We had a long hospital stay with 24 hour EEG monitoring and we were told from what Lily’s EEG looked like that there is no way this baby is walking, crawling or even out of bed. She was though! She was crawling, smiling, enjoying every day playing and doing most of the things a baby her age could do. We had a ton of appointments to follow In genetics and neurology as the doctors searched for other answers for her seizures. Finally after all the testing turned up negative her neurologist told us that Lily’s seizures were brought on by her vaccinations.

We began researching ways to treat seizures and decided we wanted to try the Ketogenic diet along with her two medications she was already on. I asked her neurologist at the time and he said she was too young. I went home and started the ketogenic diet on my own. It helped a lot and we were able to keep her seizure free and med free on the ketogenic diet for 2 years.

When Lily was 6 years old the seizures started back up and and for the past year and a half they have been manifesting. She was having myoclonic jerks, drops and myoclonic stiffening along with her first status tonic clinic. We tried at least 20-25 medications and saw zero improvement with any of them. Things got progressively worse this past year with long hospital stays, multiple ICU stays, 20-25 medication attempts, Ketogenic diet, nothing was stopping them. She was dropping all day long so she was now wearing a helmet 24-7. They were clustering and she was going Into status all the time. The emergency medication wasn’t stopping it either. She was diagnosed with failure to thrive and was losing a ton of weight and not eating or sleeping. She was seizing all the time.

I started researching and saw an article on CNN about Charlottes web and I took it into her neurologist she has had for the past 6 years who is just fantastic. She was in support of my idea to try Cannabis Oil as we had exhausted every option possible.

They told us there was nothing more they could do and nothing left to try. So my husband and I packed the 4 children and we came to Colorado. We are so happy to be here getting her the help she needs. It is the best choice we have ever made.

Lily is an amazing little girl. She is such a happy, sweet, kind, and loving little girl. She is my best teacher. There is no one who has ever taught me more than she has. I wouldn’t be half the person I am if it wasn’t for her. She is an inspiration. She endures so much and stays so strong and happy and always sees the good in life. She is incredible. God has truly blessed us. We feel so blessed to be here and finally have a light at the end of the tunnel for Lily.

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