This letter was originally sent to the Daily Item by a Turbotville resident, in response to a recent article by Dr. John Pagana of Sunbury. However, for reasons best known to themselves, our local newspaper did not publish it. In the interests of furthering the public debate on this important topic, and with the permission of the writer, we are publishing it here instead.
I am the mother of a child with a severe form of epilepsy called Lennox Gastaut syndrome. We need to have the opportunity to try medical marijuana as a control for his seizures as soon as possible, since he always has a risk of death from his multiple mixed types of seizures. After some seizures, I have watched my son stop breathing and turn blue. He is faithfully taking his prescribed medications and is on the Ketogenic diet. I am always searching for what else I could possible do to prevent a bad outcome from occurring. We have already tried 8 other medications without success.
I would like to comment on Dr Pagana’s letter. I do not feel that there should be any further delays in providing medical marijuana by researching it further. All his points are invalid in our case because my sons seizures have caused the problems addressed NOT marijuana!.
Dr Pagana explains that there can be respiratory inflammation from using this. My son would be using an OIL under his tongue that is extracted from the plant strain high in CBD and very low in THC. My son would not be exposed to any respiratory irritation.
Dr Pagana states he is concerned about the changes in the brain that may occur when using marijuana. He says these people have difficulty solving math problems. My son has declined over the past 10 years from his hundreds of seizures to the point of not being able to do simple math problems. This would not decrease in my sons case – possibly improve based other families results using medical marijuana in other states.
He addresses lack of motivation to accomplish goals- without adequate seizure control, my son is unable to accomplish basic life skills, therefore, the usage of medical marijuana could possibly achieve the seizure control needed for basic goal accomplishment. Here are a few of the side effects of one medicine my son is taking now, DEPAKOTE: delusions, euphoria, mental depression, paranoia, abnormal dreams, lack of coordination,and a change in personality. This drug is approved by the FDA even though it has caused liver failure and death in children without achieving effective seizure control!! Marijuana may not be benign as implied, but is it worse than the Depakote he is already on?
My son has also been on a benzodiazepine 3 times a day for 8 years. I’m sure Dr Pagana would agree that my son is now addicted and we could not suddenly stop this. Thus my minimal concern regarding addiction issues since this is already occurring with a “legal” medication.
He will not even be able to drive due to his seizures. Only if the medical marijuana works does he have a chance of having the independence to drive!
In other states where medical marijuana has helped provide seizure control, the issue is not goal accomplishment, addiction, or health issues because these are already factors with the prescribed medications they have already used. The issue is obtaining seizure control. With seizure control, the quality of life and basic life skills could be obtained by my son to possibly have a “normal” life. Without the opportunity to try medical marijuana for seizure control, I will never know if my son would share the successes of other families using it.
I agree that we “must make decisions that can help our citizens rather than hurt them.” In my opinion, I feel that delaying this option for my son could hurt him.
Cristy Harding, RN