Acid: a word used to describe a substance that dissolves, corrodes. Something bitter, caustic, hurtful, venomous.
Valproic acid, aka Depakote: a popular anticonvulsant used on adults and children, including my son Calvin when he was just two.
An Epilepsy Therapy Project email just sent out a teaser citing a recent discovery that valproic acid (VPA) lowers IQ in kids up to age six and is linked to decreases in brain volume. A friend pointed out that she thinks it occurs when women take it while pregnant, but if that isn't bad enough, whose to say it doesn't happen to infants and toddlers who take it? Regardless, for nearly fifty years it’s been in use as a first-line treatment for epilepsy, bipolar disorder, and, less commonly, major depression. It is also used to treat migranes and schizophrenia.
When Calvin began using Depakote for his seizures I questioned the neurologist’s decision knowing, from my own research, that Depakote is also known to cause liver failure, particularly in children under four, those who have intellectual delays, and who have uncontrolled seizures. Despite my concerns the neurologist prescribed it. Calvin became a zombie. He lost basic skills that had taken him months to develop. He didn’t smile or laugh. He sat like a blob in the middle of the room and took no interest in objects or people. After several months of increased dosing but no improved seizure control the neurologist decided to put Calvin on a second drug, Lamictal, that required weeks of slow titration in an effort to avoid Stephens-Johnson Syndrome and Toxic epidermal necrolysis, both dangerous, life-threatening rashes. Before adding the Lamictal I insisted Calvin have his blood drawn to check his liver functions. His results came back more than ten times higher than what is considered normal, indicating the likely beginnings of liver failure in my sweet little zombie kid. We took him off of the Depakote immediately and had to put him on three replacement medications, including one addictive drug.
I think about Calvin and the fact that the months on Depakote may have shrunken his delicate brain, which was already missing a significant amount of its white matter. I think about the skills he lost, the abyss he’d fallen into, the fear I felt in thinking I might never see him smile again. But then I think of all of the children who were born healthy—normal—with the promise of a bright future, of being educated, of playing sports, developing friendships, meeting sweethearts, marrying and of having children of their own. I think about Lauren and Sophie and the hundreds of thousands of children in this country who develop epilepsy for unknown reasons, who have taken Depakote and who have been robbed of so much of what life has to offer.
But the pain goes deeper, because I know in my gut that every single anticonvulsant drug my son has to take wreaks havoc with his development and well-being and yet don't stop his seizures. As far as I’m concerned they’re all brain acid, which is more than a bitter pill for all of us to swallow.
Valproic acid, aka Depakote: a popular anticonvulsant used on adults and children, including my son Calvin when he was just two.
An Epilepsy Therapy Project email just sent out a teaser citing a recent discovery that valproic acid (VPA) lowers IQ in kids up to age six and is linked to decreases in brain volume. A friend pointed out that she thinks it occurs when women take it while pregnant, but if that isn't bad enough, whose to say it doesn't happen to infants and toddlers who take it? Regardless, for nearly fifty years it’s been in use as a first-line treatment for epilepsy, bipolar disorder, and, less commonly, major depression. It is also used to treat migranes and schizophrenia.
When Calvin began using Depakote for his seizures I questioned the neurologist’s decision knowing, from my own research, that Depakote is also known to cause liver failure, particularly in children under four, those who have intellectual delays, and who have uncontrolled seizures. Despite my concerns the neurologist prescribed it. Calvin became a zombie. He lost basic skills that had taken him months to develop. He didn’t smile or laugh. He sat like a blob in the middle of the room and took no interest in objects or people. After several months of increased dosing but no improved seizure control the neurologist decided to put Calvin on a second drug, Lamictal, that required weeks of slow titration in an effort to avoid Stephens-Johnson Syndrome and Toxic epidermal necrolysis, both dangerous, life-threatening rashes. Before adding the Lamictal I insisted Calvin have his blood drawn to check his liver functions. His results came back more than ten times higher than what is considered normal, indicating the likely beginnings of liver failure in my sweet little zombie kid. We took him off of the Depakote immediately and had to put him on three replacement medications, including one addictive drug.
I think about Calvin and the fact that the months on Depakote may have shrunken his delicate brain, which was already missing a significant amount of its white matter. I think about the skills he lost, the abyss he’d fallen into, the fear I felt in thinking I might never see him smile again. But then I think of all of the children who were born healthy—normal—with the promise of a bright future, of being educated, of playing sports, developing friendships, meeting sweethearts, marrying and of having children of their own. I think about Lauren and Sophie and the hundreds of thousands of children in this country who develop epilepsy for unknown reasons, who have taken Depakote and who have been robbed of so much of what life has to offer.
But the pain goes deeper, because I know in my gut that every single anticonvulsant drug my son has to take wreaks havoc with his development and well-being and yet don't stop his seizures. As far as I’m concerned they’re all brain acid, which is more than a bitter pill for all of us to swallow.
 |
| photo by Michael Kolster |
Right on.
ReplyDeleteHave you tried marijuana? Maine has medical marijuana available, I believe....After all the bad stuff Calvin has tried, this might be worth a look-see.
ReplyDeletedear carol, we are working on it. calvin's neurologist will not prescribe it because he says, "there is no hard evidence or double blind placebo studies." i know calvin has been prescribed anticonvulsant drugs that had not been studied on children. makes me sick. we are investigating, but because it is still federally criminal it is likely too much of a risk to put calvin on it only to have the dispensaries raided by the feds. ugh.
Delete