Andrew our first son was born full term, but after a very long delivery in July of 1999. We were first time parents and were thrilled to meet our son and get started with this special time in our lives. I was breast feeding Andrew on his second day of life, when things changed. He was having trouble, and right there in front of me he turned blue. Andrew was rushed to the NICU. I will never forget following the nurse to the NICU and her shutting the window curtain closed so that we could not see them admit Andrew to the NICU. Doctors called my husband and I in our hospital room within in a hour asking if they could perform a spinal tap on Andrew. Suddenly our lives turned upside down. Andrew, our perfect newborn baby boy was in distress.
Turns out Andrew's brain bled in several areas. After a 14 day NICU stay, Andrew was sent home with us. We were not told much then, and over the years an answer as to why Andrew's brain bled has yet to be found. Andrew smiled and rolled over meeting those milestones as he should, but that would be the last developmental milestone he would meet. Andrew's first year of life was filled with countless doctor appointments, therapist appointments and home visits from county developmental specialists. Just as we were acclamating ourselves to caring for Andrew and celebrating the happy occasion of Andrew's first birthday this day instead brought an unexpected and dreadful event. A cluster seizure. Andrew's tiny body twitched forward in a frightening rhythm repeatedly for twenty minutes. His eyes were dazed. Andrew was now diagnosed with a severe form of epilepsy, Infantile Spasms. Andrew's journey of fighting epilepsy begin. Andrew was a beautiful, one year old baby and we were being told more than likely a diagnosis of Infantile Spasms would lead to "severe and profound mental retardation".
Andrew has seized in cluster patterns, seized hundreds of times of day with quick jerking movement, he has and does seize so hard shaking his arms and legs and gasping for air so many times now that we often wonder how can his body can survive this. Andrew has seized thousands of times every single day. Over the years we have been across the country, even to Canada to provide the best possible treatment for Andrew. We have tried alternative diets, supplements, therapies, and at least fifteen anti-seizure medications. Nothing has worked, in fact quite the opposite.
Medicine side effects have included vomiting, weight gain, weight loss, swallowing issues, weak immune system, fatique, drowsiness, sleepless nights, irritability and so much more. Andrew is currently at the developmental level of a six month old with a diagnosis of Lennox Gastaut Syndrome and several other disabilities. His daily seizues interfere with every part of his life, and our family life. He takes three anti-seizure medicines three times a day. We are at a stage in our lives, where we have to accept Andrew taking all of this harsh medication and still seizing daily. We feel we have tried it all. We are desparate.
We our excited and intrigued to find out if medical marijuana will help Andrew. We've seen results in kids like Andrew. We have been through so much as parents, but obviously our precious son is suffering as no one should. Just like any other parent out there our job is to care for our child and provide any treatment which will in turn give our son the quality of life he deserves.