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Neurology (Expert Forum)
Severe Depakote Reaction?
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Severe Depakote Reaction?
by caker, Jun 12, 2003 12:00AM
My 12 year old son, who has absence seizures, has been suffering from some very unusual,
catastrophic symptoms over the last 9-10 months. The multitudes
of neurologists and psychiatrists we have seen
are 'baffled'. He has been getting excrutiating headaches,
seizure breakthroughs, nausea, chills, achey "tingley" arms,
eyes get very dilated and fixed, then he begins losing his
cognitive abilities...can not read, sees numbers upside-down,
says that he "can't hear", his response time gets very delayed,
short term memory dissolves...and lastly, he begins to
hallucinate and hear voices. These last two phases are the hardest. Very frightening.
He has had about 6 of these
episodes now and they last about 20-30 days at a time. In other
words, he's had only about 30 good days in the last 9 months.
He has been tested for a brain tumor, lupus, lyme's desease,
Wilsons, lead poisoning, metabolic things, porphyria, mental
health issues (schizophrenia), atypical viruses, you name it.
All have come up negative. Currently the doctors are
wondering if he is having some sort of acute migraine along
with seizure activity...but even those do not
seem to match the frequency and duration of his episodes.
All along, my husband and I have asked if
the Depakote our son is on could be the cause? He is going through puberty, which I think is key. The doctors
have dismissed this, hesitent to wean him off...keeping his
Depakote at a constant level (375am - 375pm) while adding/deleting/adjusting various other drugs to no avail.
Any thoughts? We are desperate.
catastrophic symptoms over the last 9-10 months. The multitudes
of neurologists and psychiatrists we have seen
are 'baffled'. He has been getting excrutiating headaches,
seizure breakthroughs, nausea, chills, achey "tingley" arms,
eyes get very dilated and fixed, then he begins losing his
cognitive abilities...can not read, sees numbers upside-down,
says that he "can't hear", his response time gets very delayed,
short term memory dissolves...and lastly, he begins to
hallucinate and hear voices. These last two phases are the hardest. Very frightening.
He has had about 6 of these
episodes now and they last about 20-30 days at a time. In other
words, he's had only about 30 good days in the last 9 months.
He has been tested for a brain tumor, lupus, lyme's desease,
Wilsons, lead poisoning, metabolic things, porphyria, mental
health issues (schizophrenia), atypical viruses, you name it.
All have come up negative. Currently the doctors are
wondering if he is having some sort of acute migraine along
with seizure activity...but even those do not
seem to match the frequency and duration of his episodes.
All along, my husband and I have asked if
the Depakote our son is on could be the cause? He is going through puberty, which I think is key. The doctors
have dismissed this, hesitent to wean him off...keeping his
Depakote at a constant level (375am - 375pm) while adding/deleting/adjusting various other drugs to no avail.
Any thoughts? We are desperate.
Doctor's Answer
by CCF-Neuro-M.D.-JT, Jun 13, 2003 12:00AM
I suppose it's possible that the Depakote is the culprit, but it would be unusual for the drug to cause such dramatic symptoms with a therapeutic level, normal ammonia level, and prior history of being able to tolerate the medication without problems. If the seizures are otherwise well controlled with other meds, tapering off the depakote for a while may be an option, but this needs to be discussed with your neurologists who will have to decide what other drugs to use.
The fact that the "episodes" are actually lasting a month at a time are concerning that they may not really be episodes, but an actual steady decline intermixed with a few "good" days. Other possibilities for his symptoms include a primary neurodegenerative disease, rare genetic/metabolic disease such as adrenoleukodystrophy, mitochondrial disease, toxic exposures, and psychiatric disease (there's no one particular test to "rule out" the diagnosis of schizophrenia, it's a clinical diagnosis based on defined criteria) which may be part of the overall problem or an additional one.
I understand how frustrated your family must be with your son's condition. The clinical picture is complex and sounds like it's continuing to get worse. If you're not already at an academic center, consider bringing him to one of the top children's hospitals in the country for further evaluation. Rainbow Babies at Case Western, Children's Hospital in Philadelphia (CHOP) at U Penn, Boston CHildren's at Harvard are all excellent facilities jsut to name a few. If you are in the Cleveland area, Dr. Bruce Cohen is a metabolic disease expert here at the clinic and Dr. Elaine Wyllie is an epileptologist, (both are well known) who could potentially see your son. Further testing may be needed such as a spinal tap and more extensive EEG monitoring. Best of luck to your son and your family.
The fact that the "episodes" are actually lasting a month at a time are concerning that they may not really be episodes, but an actual steady decline intermixed with a few "good" days. Other possibilities for his symptoms include a primary neurodegenerative disease, rare genetic/metabolic disease such as adrenoleukodystrophy, mitochondrial disease, toxic exposures, and psychiatric disease (there's no one particular test to "rule out" the diagnosis of schizophrenia, it's a clinical diagnosis based on defined criteria) which may be part of the overall problem or an additional one.
I understand how frustrated your family must be with your son's condition. The clinical picture is complex and sounds like it's continuing to get worse. If you're not already at an academic center, consider bringing him to one of the top children's hospitals in the country for further evaluation. Rainbow Babies at Case Western, Children's Hospital in Philadelphia (CHOP) at U Penn, Boston CHildren's at Harvard are all excellent facilities jsut to name a few. If you are in the Cleveland area, Dr. Bruce Cohen is a metabolic disease expert here at the clinic and Dr. Elaine Wyllie is an epileptologist, (both are well known) who could potentially see your son. Further testing may be needed such as a spinal tap and more extensive EEG monitoring. Best of luck to your son and your family.
I have major crying spells to where people are wondering who just died, my heart races and I can't catch my breath, I can't handle loud noises and am TERRIBLY sleep deprived (it goes in sprurts, I will not sleep at all and then will go to sleeping 15 to 20 hours a day). Anything bad that can happen - side affect wise - HAS happened to me (thats how I feel anyways). I am so completly frustrated and overwhelmed by this all that I can't hardly see straight. My doctor says I can't drive anywhere and I can't be alone. I hear voices and feel things like bugs crawling on me or someone pulling on my clothes or body. I hate this feeling of being totally out of control of what your body does. PLEASE know you are not the only one that is going through this!! My prayers are with you! I do have a question for you though....have you found ANY alternative medicines that you are trying in place of the depakote? And if so how is that going for you? Please write me back if possible. Thank You! And take care!
Stephanie