First, I would like to say thank you to everyone who has found it in their heart to read our story and visit our page. I am overwhelmed by the amazing support that has come forward to help our little Lorelei and so many others like her.
My name is Dana and in 1999 I began dating my high school sweetheart, Jason. In 2004, we were married and just a few short years after our wedding we decided that it was time to start a family. Our journey began in a somewhat difficult way as we needed a little help with the process. I began taking a routine fertility drug and eventually we found out that we were pregnant with our first child. We were ecstatic to say the least! After nine months and a couple of mild complications, like gestational diabetes, our Lorelei was ready. Lorelei was 8 days overdue. I was induced and 12 hours later she went into fetal distress and was delivered via C-section. She was so tiny at only 5lbs, 15oz and 19 1/2” long. Lorelei needed a bit of support for the first 24 hours but overall, she was doing great. After the intense labor and the distress Lorelei was experiencing we found relief the moment she was born, her birth was a victory and she was a blessing. On that 26th of July in 2007, our lives were forever changed, I gave birth to a beautiful baby girl – we would later come to find out just how rare and special our gift was.
As the months passed, Lorelei was developing normally. In fact, at one of her regular pediatrician check-ups she was said to be “ahead of the game” developmentally. We couldn’t have been more elated and we were ready to continue growing our family. When Lorelei was just a year old we began to try for a second child. Conceiving our second child proved to be even more difficult than our first. We tried for months on our own, unsuccessfully. It was at this point that we began some fairly extensive fertility treatments. The fertility treatments worked and we found out that we were again, expecting! We were on top of the world!
In late spring of 2009 everything changed. Just two months before her second birthday I noticed Lorelei staring blankly many times throughout the day. It was a mindless stare and to my panicked shock when I would wave my hand in front of her face, I got no response….nothing. Her eyes didn’t as much as flinch. I immediately felt something was very wrong. After a few seconds she would come back around. She seemed fine but I was scared. No one noticed these spells but me. Both mine and Jason’s families would say, “She’s not even 2 yet, she’s probably just day dreaming and she will outgrow it”. Reluctantly, I waited to see if this behavior would pass but it did not. I took her to see her pediatrician, she was not as worried as I was and she advised me to wait until her 2 year check-up and if it was still occurring we would look further into the issue.
A month came and went and of course these “vacancies” were still present. They were getting worse. By this time, I had seen enough to convince myself that they were some kind of mini seizure. As instructed, I brought her back for year two year check-up and my husband and I discussed the issue with her pediatrician.
It was recommended to us that we see a doctor at Children’s Hospital of Philadelphia (CHOP); our appointment was to be in October of 2009. I so vividly remember the week leading up to Lorelei’s appointment as it was a whirlwind. We sold our home on a Friday, the very next day Lorelei’s baby sister Jolan was born, and three days after that we were at CHOP. On October 27, 2009 our lives changed again. Lorelei had been diagnosed with Epilepsy.
Of course her Daddy and I were upset but tried to be positive and not panic. I have a medical background which allowed me to think the news through in a logical way. I don’t even think I cried at first. Her diagnosis was “Childhood Absence Epilepsy”. In the spectrum of epilepsy, this type was considered “good” – if that is possible when you talk about Epilepsy. Doctors generally give a “good” prognosis with this type of Epilepsy because, generally, the symptoms are easily treated with medication and children are usually known to grow out of it with the onset of puberty. Despite the news of her diagnosis, we found some relief in knowing that our little girl may have a chance.
As the months passed, Lorelei’s medication did not seem to be helping much. We started seeing a different doctor at CHOP and after further evaluation her diagnosis was changed to “Primary Generalized Epilepsy”. The new doctor explained to us that her age at the onset of the seizures and her EEG findings were not consistent with the original diagnosis, these facts just did not lead him to believe that she had Child Absence Epilepsy. The relief we experienced due to her original diagnosis was fading.
As time passed, we trialed through many different prescription drugs at various dosages and combinations, all with little to no effect on Lorelei’s seizures. In addition to the medications not helping the seizures the side effects that Lorelei was experiencing from the medications were way more than any child should have to experience. From almost the beginning of the use of prescription medications Lorelei began to experience many psychological and behavioral side effects such as lack of impulse control, bad temperament, extreme high and low emotions and, at times, violent outbursts. She also was experiencing physical side effects such as hand tremors, sleep disturbances and fatigue. All of these side effects varied with every new medication regimen we tried, we even had a scare when one of the medications caused an allergic reaction. These side effects still remain today. As an added fear, there is potential for damage to her kidneys and liver as a result of the medications she is taking, Lorelei must be routinely monitored by her physician.
Still working with the doctors at CHOP, they recommended a special diet called a “Ketogenic Diet”. This diet is extremely strict and is comprised of primarily high fat, little protein and scant amounts of carbohydrates. To begin the diet Lorelei would have to be under medical care. In May of 2011, Lorelei was admitted to CHOP so as to be monitored while they weaned her on to the new diet. Lorelei would remain in CHOP for a week. Just a month after Lorelei’s hospital stay at CHOP we welcomed our son Lucas into the world. We now had a family of five and Lorelei’s diet was proving to be extremely challenging – we even had to use special toothpaste for her. The diet was time consuming and difficult to maintain. Additionally, she found the dietary choices to be repulsive, at one point I was even considering putting her on a feeding tube just to get food in her so that the diet had a chance to work. Despite the struggles, Lorelei remained on the diet for approximately four months when we realized that it just wasn’t working for her and she came off the diet.
We continued to experiment with different medication combinations. Her EEGs were showing bursts of seizures at a rate of one per minute. This left me breathless. To imagine what Lorelei must be going through scares me. We have tried many avenues to find our baby some relief, some peace, calm and happiness. We have recalibrated her current medication regimen many times and for now the combination we are using is the most effective yet, but still Lorelei has hundreds, to no exaggeration, of seizures every day. They last just a few seconds but while occurring she is unconscious and loses any information she has seen, heard, or learned immediately preceding the event. This is frustrates Lorelei and leaves her feeling discouraged.
Lorelei’s current diagnosis is “Primary Generalized INTRACTABLE Epilepsy”. Intractable simply means that her condition has failed several treatment attempts and remains difficult to treat. This diagnosis carries with it a lot of unknowns. One of her doctors at CHOP recently told me that he as only seen four other children that he can even kind of put in the same box with Lorelei. Where she differs from other kids with absence seizures is that Lorelei’s brain wave activity is very abnormal one hundred percent of the time, not just during seizures. Her condition also has also slowed her cognitive development as well as her motor skills. Though she is six, she is developmentally performing at the rate of a four year old. She is not yet able to write her name legibly, read, spell, do simple math, and so many other things that her peers are already doing. Without an effective treatment her condition stands to worsen as time passes. She is likely to start having other types of seizures such as Grand Mals or drop seizures. Her cognitive development will also continue to suffer and possibly decline.
With her condition being what it is and not having an effective treatment I was compelled to start researching online. For months I scoured the net. One lead that kept popping up time after time was medical marijuana (MMJ). As I searched, I found story after story of children being treated successfully with MMJ where all other treatments had failed. The stories of these children seemed hopeless, like Lorelei’s, until MMJ. At first, I disregarded it thinking that I was, of course, not going to let my child smoke pot! After seeing a CNN special about Charolette Figi, I was prompted to explore the subject in much more detail. What Lorelei would be getting is from a strain of the marijuana plant that has been bred to contain less than one percent THC (the part that gets you high) but has copious amounts of CBD (the medicinal part). The oils are extracted from the plant and would be administered to her by mouth in her food. There would be NO HIGH at all. Since then, I have made it my mission to do whatever I can within the confines of the law to get it for her.
I have started a petition, called legislators, e-mailed politicians, even the President himself. We continue to fight. Please feel free to browse the tabs at the top of the page. They are chock full of useful links, resources, letters, and info on how to contact the legislators. Please join our fight. Sign our petition. Call or write the committee members and tell them you support the legalization of medical marijuana. This medication has been proven effective in not just epilepsy but in a myriad of medical conditions. This is not just for Lorelei but for thousands of children and adults across Pennsylvania and the country. Lorelei and our whole family thanks you for your support.