It has been a while since we shared about seizures and epilepsy. We wish that were because nothing has happened, that things are "normal"...
The truth is, Adrian has had a couple more seizures since we shared about the one that happened at Panera Bread last June. Once at the airport while on his way to visit his sister in Texas last fall. Once just before bedtime at home early this year. That one and the post-seizure psychosis was very intense, but we had a neighbor and family come to help.
Because of this recent activity, our visit to Adrian's neurologist at Penn Medicine in Philadelphia this month resulted in some different conversations.
Adrian was already in the middle of a medication change. Partly because the Vimpat he's been taking is not proving to be effective anymore, and because our health insurance put Vimpat on the "non-formulary" drug list leading it to cost us about $800 for a 3 month supply instead of the $40/month we were paying. No thanks!
These are tough transitions because people can't just suddenly start and stop seizure meds. It's a gradual addition of a new drug while remaining on the other, then gradually reducing the original med. It can really mess with the body. Adrian's been adjusting pretty well, but some days are rough.
But the conversation we had with his neurologist's physician assistant did NOT fill us with hope that this new medication will be the "solution" to his seizures. She said that about 30% of the population of people with epilepsy are resistant to drugs completely stopping their seizures. If two or three different drugs have not been successful, it's not likely that any drug will work 100%.
Adrian is now trying his 5th medication in 6 years....
Her facts left a little sting as we continue to seek answers on this journey. But she is a knowledgeable and kind provider, so we trust her insight.
So then what? If Adrian is not likely to be seizure free on medication, what options exist in the medical world?
We are seeing one of the leading neurologists in the country, who spends much of his time in research at Penn Medicine. They have an epilepsy center that allows them to keep patients for several days or a week to closely monitor seizure activity to see what's happening in the brain during an episode.
They intentionally provoke a seizure to occur in this controlled environment through means such as flashing lights, sleep deprivation, medication reduction and more.
The P.A. recommended that if Adrian has a seizure while on this new medication, he should consider participating in this study.
On the one hand, it would be wonderful to have a more clear picture of what's happening in Adrian's brain when a seizure occurs and how that could help better treat the issue.
On the other hand, the idea of sitting in a hospital for a week with wires attached and video cameras watching your every move while KNOWING that a seizure is coming...is pretty horrifying to us.
At this point, we are gearing up for the possibility of doing this sometime in the next year. He's going to have current MRIs and EEGs done this summer, since it's been three years since his last ones. Then, we'll see what happens and what we decide.
For now, he's still increasing the new medication and getting blood work done to make sure it's at the proper dosage for his body.
In spite of this on-going issue, Adrian continues to lead our family with love and strength. He amazes me everyday with his work ethic - He doesn't 'help' with housework...he does about 90% of it! He cares for our year-old son with sweet tenderness and understands his needs better than even mommy. And he is the involved father that our daughters need.
It would be wonderful to get some better answers. But it will be most wonderful when he can live years without this cloud lingering so close by.
Because of this recent activity, our visit to Adrian's neurologist at Penn Medicine in Philadelphia this month resulted in some different conversations.
Adrian was already in the middle of a medication change. Partly because the Vimpat he's been taking is not proving to be effective anymore, and because our health insurance put Vimpat on the "non-formulary" drug list leading it to cost us about $800 for a 3 month supply instead of the $40/month we were paying. No thanks!
These are tough transitions because people can't just suddenly start and stop seizure meds. It's a gradual addition of a new drug while remaining on the other, then gradually reducing the original med. It can really mess with the body. Adrian's been adjusting pretty well, but some days are rough.
But the conversation we had with his neurologist's physician assistant did NOT fill us with hope that this new medication will be the "solution" to his seizures. She said that about 30% of the population of people with epilepsy are resistant to drugs completely stopping their seizures. If two or three different drugs have not been successful, it's not likely that any drug will work 100%.
Adrian is now trying his 5th medication in 6 years....
Her facts left a little sting as we continue to seek answers on this journey. But she is a knowledgeable and kind provider, so we trust her insight.
So then what? If Adrian is not likely to be seizure free on medication, what options exist in the medical world?
We are seeing one of the leading neurologists in the country, who spends much of his time in research at Penn Medicine. They have an epilepsy center that allows them to keep patients for several days or a week to closely monitor seizure activity to see what's happening in the brain during an episode.
They intentionally provoke a seizure to occur in this controlled environment through means such as flashing lights, sleep deprivation, medication reduction and more.
The P.A. recommended that if Adrian has a seizure while on this new medication, he should consider participating in this study.
On the one hand, it would be wonderful to have a more clear picture of what's happening in Adrian's brain when a seizure occurs and how that could help better treat the issue.
On the other hand, the idea of sitting in a hospital for a week with wires attached and video cameras watching your every move while KNOWING that a seizure is coming...is pretty horrifying to us.
At this point, we are gearing up for the possibility of doing this sometime in the next year. He's going to have current MRIs and EEGs done this summer, since it's been three years since his last ones. Then, we'll see what happens and what we decide.
For now, he's still increasing the new medication and getting blood work done to make sure it's at the proper dosage for his body.
In spite of this on-going issue, Adrian continues to lead our family with love and strength. He amazes me everyday with his work ethic - He doesn't 'help' with housework...he does about 90% of it! He cares for our year-old son with sweet tenderness and understands his needs better than even mommy. And he is the involved father that our daughters need.
It would be wonderful to get some better answers. But it will be most wonderful when he can live years without this cloud lingering so close by.
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| Adrian and I out for a date nigh last week. I can't tell you how much I appreciate this man and all he does for our family, especially while facing daily health-related challenges. |
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