Our hearts break when we see and think about the youngsters suffering with intractable seizures and hope their future is not the same as our daughter, Amy’s. We hope they can have a chance to see if CBD oil is the miracle they have been waiting for. And at least, they will not have to be dealing with the multiple devastating side effects that Amy has had to cope with throughout her 32 years.
Amy had her first seizure at 14 months of age. Since then, we have been in a battle to control her seizures. She has been on over 20 medications; at the highest doses possible and in many different combinations. We have even tried medications several times in hopes that they would help in a different combination. We have tried a variant of photo the ketogenic diet to no avail as well as having surgery to implant a vagal nerve stimulator in hopes of helping control her seizures.
Amy, now 32 years old, has received no relief from her non-stop seizures over the years with all these efforts. She is still currently on medications but continues to have dangerous, life-threatening, non-stop generalized seizures on a weekly basis. Rescue medications including diazepam and midazolam are needed in very high doses to stop these events. Since we have been unable to stop Amy’s seizures with the available medications, she has suffered in many ways, losing a lot of ground developmentally.
Besides the failure of current medications, Amy has had innumerable side effects. Topamax has given her multiple kidney stones in both kidneys. She has had to endure six hospital outpatient surgeries to mediate these and still needs to be monitored on a yearly basis. Banzel caused Amy to be hospitalized for over 3 weeks and we did not expect her to survive that ordeal. Luckily, she pulled through. Potiga, which recently became available, caused Amy to have urinary retention. In other words, she was unable to urinate on her own and I had to catheterize her. This carries the risk of infection and other issues. Shortly after that, Amy lost the ability to walk on her own and she had to be placed in a wheelchair.
Needless to say, the doctor said it was time to stop that drug. Years and years of multiple medications have given Amy liver nodules throughout her liver. She would be a candidate for a liver transplant if it were not for her epilepsy. Therefore, we are left in the unenviable position of waiting for these liver nodules to either burst, which can cause her to “bleed out,” or for them to turn malignant, which is a very high likelihood. When this occurs, Amy would not be a good candidate for cancer treatment, and we would just try to make her as comfortable as possible.
Amy has suffered greatly over the past 30+ years without any relief. We are hoping that she can at least have the chance to try CBD oil to see if it offers her any help. Our hearts break when we see and think about the youngsters suffering with intractable seizures and we hope you will give them a better future.