I love these letters.
Our baby girl was diagnosed with epilepsy when she was just 6 months old in 2007. Since then, she has been on a myriad of anti-seizure drugs. Each drug would work for 6 to 12 months before we had to begin increasing doses and trying new medications to help her. Her seizures are absence in nature. She was having upwards of 50 in a 24 hour period when she was not medicated. She has grown up with speech and language delays, cognitive delays, gross and fine motor delays and academic struggles. Irritability, mood swings, depression and anxiety have been a part of her personality for as long as we can remember. The most difficult trait to watch was her struggle within herself to complete a simple activity like getting her jacket on. It wasn’t so much that she couldn’t do it, she just could not get started. It was an internal struggle impacting her executive functioning skills. In May of 2014, her most recent prescription medication was beginning to fail her. The increase in dosage was beginning to impact her cognitive skills and we were told about yet another medication that we would soon begin to introduce to her little body. When I read about the side effects, I was horrified. One parent wrote that it was like “pressing the mute button on your kid.” I’ll never forget those words. I did not want to give her the medication. That is when we began our own research on medical marijuana. After reading countless articles and speaking with neurologists (that would not and could not write us a prescription), we decided to find it on our own. That is when my internet searches brought me to Dr. Frankel and his wealth of knowledge on the subject. He talked us through the process of selecting a CBD oil for her and how the dosing would work. We received our first bottle in July of 2014. It sat on our kitchen counter for a few days. Regardless of everything we had learned, it was still a big step to give it to our now 7 year old little girl. Dr. Frankel told us to expect her to be lethargic on day one of administration. His rationale for that was that her brain would finally get to rest from all the activity. Sure enough, that first day, she didn’t do much and she was tired. Day 2 was better and by the 3rd day she was no longer lethargic. We increased her dose weekly until we no longer saw any seizures. We began to taper her off of her prescription meds in August and by mid October 2014, she was only taking the CBD oil. The impact on her quality of life has been nothing short of amazing for us. We felt like we met her for the first time that summer. She was speaking in sentences, running and jumping like any other kid. Her ability to learn new things improved, she began reading. She was so expressive and happy! It has been 1 and a half years since she has been on the CBD oil and we have not looked back. I can honestly say, that she has not experienced any negative side effects from the medication. She still has break through cluster seizure activity, but it’s not the same as it was on the prescriptions. She doesn’t lose her train of thought and she is not emotional or tired afterwards. Also the duration has been cut from up to 9 seconds to just 1 or 2 seconds at the most. Dr. Frankel has been such a wonderful support for our family. He acknowledges that he is learning along with this patients. His problem solving suggestions have been innovative. When our daughter experienced increases in seizure activity in that first year, his advice was not always about increasing the medication. He gave tips on when and how and with what it was administered to her and his suggestions worked. We are forever thankful that medical marijuana has been an option for our family and that Dr. Frankel has been there to guide us.