Seizures increasing in 5 year old

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Hello everyone. My wife and I have a 5 and half year old son who was a 26 week premie. Our son has a VP shunt and unfortunately contracted bacterial meningitis in the hospital when he was 7 weeks old. The result of this was scar tissue causing seizures. His most recent EEG still shows activity in the occipital area, so our neurologist is still confident of focal seizures. He’s been on keppra since he was an infant and we did not witness his first seizure until he was a little over 3 years old. Unfortunately, the frequency of seizures has increased from yearly, to semi-annually, to monthly, to now bi-weekly. Since Christmas, he has had 7 seizures. Our neurologist put him on trileptal three months ago, but has recently decided to ween him off of it because of the lack of efficiency. The difficult part for my wife and I is two fold. First, when we’ve witnessed his seizures in the past, our son would tell us he didn’t feel good, would vomit, and his head would turn to the left, and eventually he would have a tonic-clinic seizure on one side of his body. But these last two seizures, he’s not given us any signs, and just went right into the seizure. Second, with every seizure he’s had, he’s never come out of it on his own. We’ve had to administer Diastat after 5 minutes of seizing. So now because we’re not given any “warnings” prior to seizure, compounded with his lack of ability to stop seizing on his own. My wife and I are a wreck. My wife is currently sleeping with him at night because we’re scared that he’ll have one and we’ll not hear him through our monitor. We’ve actually bought him an Apple Watch with an app that’s supposed to detect abnormal motion, but on his last seizure, he was wearing the watch and it did not alert us. So we have no confidence in that method. We are now suspecting that he is extremely sensitive to his sleep schedule. In his last couple seizures, we’ve documented that he’s either not gotten enough sleep the night before, or not taken his usual afternoon nap. We’re hopeful that our Neurologist can figure something out for him with the type of medications but for now are definitely going through a difficult season.

Comments

My child's common triggers

Submitted by Amy Jo on Mon, 2018-05-14 - 16:39

My child's common triggers are lack of sleep, illness, stress (good or bad). Boring is good. We used to talk to each new elementary teacher about how having surprises is NOT OK. Next year that kid goes to middle school so not sure how that's going to work but those teachers don't usually go overboard in excitement with 180+ kids a day.Is your children's hospital well ranked in the neurology and neurosurgery rankings? Perhaps have a place lined up for a second opinion. Are you working with epileptology, hope so but if not, it's time to consult someone there. Talk to your neurologist about giving rescue meds earlier if it is always needed because waiting longer may make it harder to stop the seizure. For some kids keto helps but ask about all diet options like MAD. Last I understood, true keto can impact hydration and that just isn't ok for a kid with a shunt. My child has a shunt but prefers to eat a limited diet so keto or MAD would not fly. But my child has a different form of hydro and (we now know) has a genetic form of epilepsy so... not like your kid. Although, until it became clear the epilepsy was genetic, they pretty much assumed it was due to damage from the hydrocephalus or from the surgeries.You may have a resource that gives some other info.... Most surgeons are very careful in how they talk but sometimes it might come up... would the scar tissue impact anything to do with his care from neurosurgery (well, that's the opening I'd use to ask because I have way more faith in neurosurgeons interpreting imaging than neurologists). In fact, you should be able to request a copy of all of the imaging reports and more if need be. I have something like an 8in+ stack of reports, there's 8+ MRIs, 30+ CTs, scads of brief hospitalizations, 6 shunt surgeries, all the appts with various specialists, etc... Our child's surgeon just happens to specialize in epilepsy, that's a bit unusual but it was helpful when he cautioned that the initial assumptions were probably off (diagnosis took about 6 months for long drawn out reason).

My child's common triggers are lack of sleep, illness, stress (good or bad). Boring is good. We used to talk to each new elementary teacher about how having surprises is NOT OK. Next year that kid goes to middle school so not sure how that's going to work but those teachers don't usually go overboard in excitement with 180+ kids a day.Is your children's hospital well ranked in the neurology and neurosurgery rankings? Perhaps have a place lined up for a second opinion. Are you working with epileptology, hope so but if not, it's time to consult someone there. Talk to your neurologist about giving rescue meds earlier if it is always needed because waiting longer may make it harder to stop the seizure. For some kids keto helps but ask about all diet options like MAD. Last I understood, true keto can impact hydration and that just isn't ok for a kid with a shunt. My child has a shunt but prefers to eat a limited diet so keto or MAD would not fly. But my child has a different form of hydro and (we now know) has a genetic form of epilepsy so... not like your kid. Although, until it became clear the epilepsy was genetic, they pretty much assumed it was due to damage from the hydrocephalus or from the surgeries.You may have a resource that gives some other info.... Most surgeons are very careful in how they talk but sometimes it might come up... would the scar tissue impact anything to do with his care from neurosurgery (well, that's the opening I'd use to ask because I have way more faith in neurosurgeons interpreting imaging than neurologists).  In fact, you should be able to request a copy of all of the imaging reports and more if need be. I have something like an 8in+ stack of reports, there's 8+ MRIs, 30+ CTs, scads of brief hospitalizations, 6 shunt surgeries, all the appts with various specialists, etc... Our child's surgeon just happens to specialize in epilepsy, that's a bit unusual but it was helpful when he cautioned that the initial assumptions were probably off (diagnosis took about 6 months for long drawn out reason).

My child's common triggers are lack of sleep, illness, stress (good or bad). Boring is good. We used to talk to each new elementary teacher about how having surprises is NOT OK. Next year that kid goes to middle school so not sure how that's going to work but those teachers don't usually go overboard in excitement with 180+ kids a day.Is your children's hospital well ranked in the neurology and neurosurgery rankings? Perhaps have a place lined up for a second opinion. Are you working with epileptology, hope so but if not, it's time to consult someone there. Talk to your neurologist about giving rescue meds earlier if it is always needed because waiting longer may make it harder to stop the seizure. For some kids keto helps but ask about all diet options like MAD. Last I understood, true keto can impact hydration and that just isn't ok for a kid with a shunt. My child has a shunt but prefers to eat a limited diet so keto or MAD would not fly. But my child has a different form of hydro and (we now know) has a genetic form of epilepsy so... not like your kid. Although, until it became clear the epilepsy was genetic, they pretty much assumed it was due to damage from the hydrocephalus or from the surgeries.You may have a resource that gives some other info.... Most surgeons are very careful in how they talk but sometimes it might come up... would the scar tissue impact anything to do with his care from neurosurgery (well, that's the opening I'd use to ask because I have way more faith in neurosurgeons interpreting imaging than neurologists). In fact, you should be able to request a copy of all of the imaging reports and more if need be. I have something like an 8in+ stack of reports, there's 8+ MRIs, 30+ CTs, scads of brief hospitalizations, 6 shunt surgeries, all the appts with various specialists, etc... Our child's surgeon just happens to specialize in epilepsy, that's a bit unusual but it was helpful when he cautioned that the initial assumptions were probably off (diagnosis took about 6 months for long drawn out reason).

Seizures increasing in 5 year old

Comments

My child's common triggers

Submitted by Amy Jo on Mon, 2018-05-14 - 16:39

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