Pippa

My daughter, Pippa, had an Intraventricular Hemorrhage at birth. She was diagnosed with cerebral palsy before her second birthday. Just before her fourth birthday, she began having frequent seizures and was diagnosed with a severe and rare form of epilepsy called Lennox-Gastaut Syndrome. This disorder is characterized by seizures that are resistant to medical treatment, and Pippa’s epilepsy has proven to be extremely challenging to control. She has had eleven different drugs fail her (including three different brands of CBD oil), she is on her second VNS, and she has had two corpus callostomoy surgeries. That surgery stopped the drop seizures she was having, but seven months after surgery, she started having focal tonic seizures that are coming from a different part of her brain than the drops. Pippa is currently trying Epidiolex, which appears to be equally ineffective at controlling her painful seizures. She is having multiple seizures every day, without fail.

 
I had such high hopes for Epidiolex, and her neurologist told me that “we are running out of options.” We are so out of options now that the doctor is talking about going back to the beginning of the list of anti-epilepsy drugs that have already failed to see if they will work THIS time. We, as a family, are reluctant to do this because it could means months (if not years) of more trial-and-error. It is exhausting. It is frustrating. A friend’s daughter died from the same seizure disorder last year; this is always, always, always on my mind. We have got to stop her seizures to keep her alive. My gut tells me that whole plant medical marijuana is the key.
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