Neurologist said she doesn't think son is having seizures, but should get EEG anyway

[Anonymous]

Anonymous wrote:Op again - The neurologist said she doesn't see any signs of seizures, but suggested getting an EEG so that we have a the full overall picture of his diagnoses/issues. As pp said "covering all the bases." And then she mentioned the medication thing.
He has already met his deductible this year, so if there is a time to do it, I suppose it would be now.

Well be careful that you get the proper billing then -- if the EEG is sleep deprived and requires hospital admission but is deemed medically unecessary, you'll be stuck with a big bill.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OK - I poked around and apparently it is 80% for kids that have the type of epilespy my son has, and around 30-40% for other kinds. So much higher - well, three to four times higher, as noted in the study discussed above - on average. Point being that they often go hand in hand, and many kids that are medicated for epilepsy are also taking ADHD meds.

This may be true -- however, not all kids with ADHD have epilepsy, and it is not standard practice to screen all kids with ADHD with an EEG for no other reason than the ADHD!

Nope. But it does explain why you can't not worry about it being absence seizures because there is also ADHD. I think it would be ridiculous if the school has mentioned zoning out to avoid doing an eeg. Why would you run that risk?

It's precisely because there just isn't a big risk here. The neurologist sees no clinical signs of absence seizures. More screenings and tests are not always a good thing. That's what I would recommend another convo with the neurologist to discuss exactly what she things the EEG is going to show, and what she would think about skipping it. She may very well say "That's fine to skip it, just covering all the bases. Come back in six months or if anything else happens." Or, she may have a clearer rationale for why she recommends an EEG.

I completely disagree with your risk analysis. This is precisely when you are supposed to test for absence seizures - when you suspect ADHD and there is zoning out!! http://www.hopkinsmedicine.org/healthlibrary/conditions/nervous_system_disorders/absence_seizures_134,16/

Also, what you are failing to account for is the enormous potential damage to the brain posed by unmitigated seizure activity. Here, low risk of seizures must be weighed against the very high risk posed by not ruling them out.

If every kid who had suspected ADHD and zoned out got an EEG, that would be an enormous waste of resources. And the neuro has already said that the zoning out doesn't seem to be absence seizures.

Also, I think you have a mistaken understanding of epilepsy and seizures. Seizures do not cause "enormous potential damage" in and of themselves, although they may be a symptom of damage that exists. Delaying treatment for epilepsy does not worsen the condition or affect long term remission, according to current thinking. You treat epilepsy to treat the seizures; it's not something like taking antibiotics where you need to take the meds right away to keep it from getting worse. The exception is something like Landau-Kleffner where early treatment can help developmental progress. But there's no evidence of that here.

I would skip the EEG here myself unless the neurologist saw something *clinically* that made her want to investigate more, not just a desire to rule everything possible out.

Not all neurologists agree on this. Ours does not. We saw spiking, not seizures, on the EEG, and my son does not have a syndrome as far as we know. But we have seen major improvements in behavior, speech, and focus, since medicating, and by no means are we alone. There is definitely controversy about treating sub clinical seizures or whether undetected seizures cause brain damage, despite your assertion. It is, as you noted often a sign of damage, but unmitigated seizure activity, or seizure activity that is not responsive to treatment, has most definitely been associated with much pooer cognitive outcomes. Because simply not that much is known at this time, doctors do not know if this is a chicken or an egg issue -is it because of a damaged brain or does prolonged unchecked seizure activity led to brain damage. Regardless, one of the reasons you medicate, according to our pedioatric neuologist, is to train the brain not to seize. I simply can't imagine not ruling out such a serious issue if it was suggested by the school and the neuro thought it prudent. Also, how on earth would the nuero see signs of absence seizures in a clinic appointment? They are hard even to spot on a regular EEG. There is no way they can be ruled out in a office visit.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OK - I poked around and apparently it is 80% for kids that have the type of epilespy my son has, and around 30-40% for other kinds. So much higher - well, three to four times higher, as noted in the study discussed above - on average. Point being that they often go hand in hand, and many kids that are medicated for epilepsy are also taking ADHD meds.

This may be true -- however, not all kids with ADHD have epilepsy, and it is not standard practice to screen all kids with ADHD with an EEG for no other reason than the ADHD!

Nope. But it does explain why you can't not worry about it being absence seizures because there is also ADHD. I think it would be ridiculous if the school has mentioned zoning out to avoid doing an eeg. Why would you run that risk?

It's precisely because there just isn't a big risk here. The neurologist sees no clinical signs of absence seizures. More screenings and tests are not always a good thing. That's what I would recommend another convo with the neurologist to discuss exactly what she things the EEG is going to show, and what she would think about skipping it. She may very well say "That's fine to skip it, just covering all the bases. Come back in six months or if anything else happens." Or, she may have a clearer rationale for why she recommends an EEG.

I completely disagree with your risk analysis. This is precisely when you are supposed to test for absence seizures - when you suspect ADHD and there is zoning out!! http://www.hopkinsmedicine.org/healthlibrary/conditions/nervous_system_disorders/absence_seizures_134,16/

Also, what you are failing to account for is the enormous potential damage to the brain posed by unmitigated seizure activity. Here, low risk of seizures must be weighed against the very high risk posed by not ruling them out.

If every kid who had suspected ADHD and zoned out got an EEG, that would be an enormous waste of resources. And the neuro has already said that the zoning out doesn't seem to be absence seizures.

Also, I think you have a mistaken understanding of epilepsy and seizures. Seizures do not cause "enormous potential damage" in and of themselves, although they may be a symptom of damage that exists. Delaying treatment for epilepsy does not worsen the condition or affect long term remission, according to current thinking. You treat epilepsy to treat the seizures; it's not something like taking antibiotics where you need to take the meds right away to keep it from getting worse. The exception is something like Landau-Kleffner where early treatment can help developmental progress. But there's no evidence of that here.

I would skip the EEG here myself unless the neurologist saw something *clinically* that made her want to investigate more, not just a desire to rule everything possible out.

Not all neurologists agree on this. Ours does not. We saw spiking, not seizures, on the EEG, and my son does not have a syndrome as far as we know. But we have seen major improvements in behavior, speech, and focus, since medicating, and by no means are we alone. There is definitely controversy about treating sub clinical seizures or whether undetected seizures cause brain damage, despite your assertion. It is, as you noted often a sign of damage, but unmitigated seizure activity, or seizure activity that is not responsive to treatment, has most definitely been associated with much pooer cognitive outcomes. Because simply not that much is known at this time, doctors do not know if this is a chicken or an egg issue -is it because of a damaged brain or does prolonged unchecked seizure activity led to brain damage. Regardless, one of the reasons you medicate, according to our pedioatric neuologist, is to train the brain not to seize. I simply can't imagine not ruling out such a serious issue if it was suggested by the school and the neuro thought it prudent. Also, how on earth would the nuero see signs of absence seizures in a clinic appointment? They are hard even to spot on a regular EEG. There is no way they can be ruled out in a office visit.

I agree with you that treating seizures can improve learning, behavior, and thus short-term cognitive outcomes. I don't think it would be unreasonable for OP to get the EEG. But schools don't diagnose absence seizures, and there were no clinical signs. (Absence seizures can be tested for by the hyperventilation test, which was negative here.) Without more indications of seizures, I think skipping the EEG is a totally reasonable course of action. Lots of time if you have in-depth conversations about this stuff with doctors they'll agree that watchful waiting is fine. There bias is just to do everything all at once, and you sometimes have to tease out whether the test is urgent, or something that can wait a while to see how things evolve, especially when there's a reasonable explanation for what's going on (normal child daydreaming).

[Anonymous]

Is there a reason why your neurologist wants a sleep-deprived EEG for a child who has never had a witnessed seizure? It seems totally reasonable for me to give your child a waking EEG with various stimuli (strobe lights, etc.) for seizures, but a sleep-deprived EEG for a child with no known seizures?

Everyone has a seizure threshold. If I take a "normal" person and deprive them of sleep long enough, that person will have a seizure. Is there a reason your neurologist is looking to, essentially, evoke seizures in your child? Because once your child has a seizure, he will need to be medicated for epilepsy. For a lifetime, essentially.

I think you need to think long and hard about whether you want to do a sleep deprived EEG in a child just to satisfy the intellectual curiosity of a neurologist when, if your child does have a seizure, he's going to need medication. The road to finding the right medication for epilepsy and keeping your child's epilepsy medication in balance is damn hard.

I would not do this. Ever. For a child who has no known witnessed seizures? What in the world? Maybe we can also do a partial drowning and see if he has a heart attack, and then perhaps we can inject him with measles and see if his immune system is functioning well.

To me, this is the essence of the medical community's "rule out" blindness. There is absolutely no reason to spend $5,000 to put your child through a test to evoke a seizure which will be painful for him just to satisfy some clinician's curiosity.

[Anonymous]

Anonymous wrote:Is there a reason why your neurologist wants a sleep-deprived EEG for a child who has never had a witnessed seizure? It seems totally reasonable for me to give your child a waking EEG with various stimuli (strobe lights, etc.) for seizures, but a sleep-deprived EEG for a child with no known seizures?

Everyone has a seizure threshold. If I take a "normal" person and deprive them of sleep long enough, that person will have a seizure. Is there a reason your neurologist is looking to, essentially, evoke seizures in your child? Because once your child has a seizure, he will need to be medicated for epilepsy. For a lifetime, essentially.

I think you need to think long and hard about whether you want to do a sleep deprived EEG in a child just to satisfy the intellectual curiosity of a neurologist when, if your child does have a seizure, he's going to need medication. The road to finding the right medication for epilepsy and keeping your child's epilepsy medication in balance is damn hard.

I would not do this. Ever. For a child who has no known witnessed seizures? What in the world? Maybe we can also do a partial drowning and see if he has a heart attack, and then perhaps we can inject him with measles and see if his immune system is functioning well.

To me, this is the essence of the medical community's "rule out" blindness. There is absolutely no reason to spend $5,000 to put your child through a test to evoke a seizure which will be painful for him just to satisfy some clinician's curiosity.

You don't have to medicate for a single seizure! I am also not sure that a sleep deprived EEG could evoke a seizure. But, I agree that OP could ask more questions or get a second opinion about it.

[Anonymous]

Just to be clear, it sounds they are suggesting a sleep deprived EEG which is where you wake the kid early, maybe skip a nap, and the child is awake but sleepy during an outpatient test of an hour or so.

This isn't about an overnight E.E.G. That is done inpatient, where the child is monitored in their sleep and during the day for 24 -48 hours.

Yes, everyone has a seizure threshold, but most people's seizure thresholds are a lot higher than functioning on reduced sleep. If they weren't then new parents and frequent travelers would be having seizures left and right.

The fact that the OP's child's behavior changes so dramatically when sleepy that she's afraid of this completely noninvasive test is an indication that she should have this checked out. It will probably be negative, bit given that ADHD meds can increase seizures in kids with low seizure thresholds, and that he's at a critical point in his educational journey, thus particular vulnerable to the disruption that seizures cause, it makes sense to try.

Comparing an EEG to almost drowning someone is absurd. Compare it to a cardiac stress test where someone provides a common level of stress by asking the person to walk on a treadmill.

[Anonymous]

Anonymous wrote:Just to be clear, it sounds they are suggesting a sleep deprived EEG which is where you wake the kid early, maybe skip a nap, and the child is awake but sleepy during an outpatient test of an hour or so.

This isn't about an overnight E.E.G. That is done inpatient, where the child is monitored in their sleep and during the day for 24 -48 hours.

Yes, everyone has a seizure threshold, but most people's seizure thresholds are a lot higher than functioning on reduced sleep. If they weren't then new parents and frequent travelers would be having seizures left and right.

The fact that the OP's child's behavior changes so dramatically when sleepy that she's afraid of this completely noninvasive test is an indication that she should have this checked out. It will probably be negative, bit given that ADHD meds can increase seizures in kids with low seizure thresholds, and that he's at a critical point in his educational journey, thus particular vulnerable to the disruption that seizures cause, it makes sense to try.

Comparing an EEG to almost drowning someone is absurd. Compare it to a cardiac stress test where someone provides a common level of stress by asking the person to walk on a treadmill.

it's just not standard of care to do an EEG on all ADHD kids who get nuts when they are sleep deprived ... I am not encouraging OP to go against considered medical advise, but instead to have another convo with the neurologist about it. These things can be subjective, and if the dr knows that OP isn't the "do all the tests!" type then she may reconsider her recommendation.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Just to be clear, it sounds they are suggesting a sleep deprived EEG which is where you wake the kid early, maybe skip a nap, and the child is awake but sleepy during an outpatient test of an hour or so.

This isn't about an overnight E.E.G. That is done inpatient, where the child is monitored in their sleep and during the day for 24 -48 hours.

Yes, everyone has a seizure threshold, but most people's seizure thresholds are a lot higher than functioning on reduced sleep. If they weren't then new parents and frequent travelers would be having seizures left and right.

The fact that the OP's child's behavior changes so dramatically when sleepy that she's afraid of this completely noninvasive test is an indication that she should have this checked out. It will probably be negative, bit given that ADHD meds can increase seizures in kids with low seizure thresholds, and that he's at a critical point in his educational journey, thus particular vulnerable to the disruption that seizures cause, it makes sense to try.

Comparing an EEG to almost drowning someone is absurd. Compare it to a cardiac stress test where someone provides a common level of stress by asking the person to walk on a treadmill.

it's just not standard of care to do an EEG on all ADHD kids who get nuts when they are sleep deprived ... I am not encouraging OP to go against considered medical advise, but instead to have another convo with the neurologist about it. These things can be subjective, and if the dr knows that OP isn't the "do all the tests!" type then she may reconsider her recommendation.

But it is the standard of care to investigate the possibility of absence seizures when a child is reported to have lapses in attention that aren't explained. Given that the neurologist feels that seizures haven't been ruled out, it makes sense to continue to investigate, especially since the test, while annoying is not at all invasive or risky.

My kid had similar lapses and the neuro asked for an eeg that was negative and a sleep study that showed apnea. He was diagnosed with having episodes of microsleep caused by apnea.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Also - almost all kids with epilepsy have adhd.

Person with epilepsy here. Have never ever heard this.

^^^ This. I've had epilepsy since I was a toddler and this is the most asinine thing I've ever heard, and Ive heard a lot of dumb stuff.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Just to be clear, it sounds they are suggesting a sleep deprived EEG which is where you wake the kid early, maybe skip a nap, and the child is awake but sleepy during an outpatient test of an hour or so.

This isn't about an overnight E.E.G. That is done inpatient, where the child is monitored in their sleep and during the day for 24 -48 hours.

Yes, everyone has a seizure threshold, but most people's seizure thresholds are a lot higher than functioning on reduced sleep. If they weren't then new parents and frequent travelers would be having seizures left and right.

The fact that the OP's child's behavior changes so dramatically when sleepy that she's afraid of this completely noninvasive test is an indication that she should have this checked out. It will probably be negative, bit given that ADHD meds can increase seizures in kids with low seizure thresholds, and that he's at a critical point in his educational journey, thus particular vulnerable to the disruption that seizures cause, it makes sense to try.

Comparing an EEG to almost drowning someone is absurd. Compare it to a cardiac stress test where someone provides a common level of stress by asking the person to walk on a treadmill.

it's just not standard of care to do an EEG on all ADHD kids who get nuts when they are sleep deprived ... I am not encouraging OP to go against considered medical advise, but instead to have another convo with the neurologist about it. These things can be subjective, and if the dr knows that OP isn't the "do all the tests!" type then she may reconsider her recommendation.

But it is the standard of care to investigate the possibility of absence seizures when a child is reported to have lapses in attention that aren't explained. Given that the neurologist feels that seizures haven't been ruled out, it makes sense to continue to investigate, especially since the test, while annoying is not at all invasive or risky.

My kid had similar lapses and the neuro asked for an eeg that was negative and a sleep study that showed apnea. He was diagnosed with having episodes of microsleep caused by apnea.

But it sounds like she has ruled out absence seizures, due to the clinical picture and the hyperventilation test.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Also - almost all kids with epilepsy have adhd.

Person with epilepsy here. Have never ever heard this.

^^^ This. I've had epilepsy since I was a toddler and this is the most asinine thing I've ever heard, and Ive heard a lot of dumb stuff.

Given that it's four times higher in the epilepsy population, so around 40%, which is a huge percentage compared to the average population, it's not really the most asinine thing ever, is it? You should get out more.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Just to be clear, it sounds they are suggesting a sleep deprived EEG which is where you wake the kid early, maybe skip a nap, and the child is awake but sleepy during an outpatient test of an hour or so.

This isn't about an overnight E.E.G. That is done inpatient, where the child is monitored in their sleep and during the day for 24 -48 hours.

Yes, everyone has a seizure threshold, but most people's seizure thresholds are a lot higher than functioning on reduced sleep. If they weren't then new parents and frequent travelers would be having seizures left and right.

The fact that the OP's child's behavior changes so dramatically when sleepy that she's afraid of this completely noninvasive test is an indication that she should have this checked out. It will probably be negative, bit given that ADHD meds can increase seizures in kids with low seizure thresholds, and that he's at a critical point in his educational journey, thus particular vulnerable to the disruption that seizures cause, it makes sense to try.

Comparing an EEG to almost drowning someone is absurd. Compare it to a cardiac stress test where someone provides a common level of stress by asking the person to walk on a treadmill.

it's just not standard of care to do an EEG on all ADHD kids who get nuts when they are sleep deprived ... I am not encouraging OP to go against considered medical advise, but instead to have another convo with the neurologist about it. These things can be subjective, and if the dr knows that OP isn't the "do all the tests!" type then she may reconsider her recommendation.

But it is the standard of care to investigate the possibility of absence seizures when a child is reported to have lapses in attention that aren't explained. Given that the neurologist feels that seizures haven't been ruled out, it makes sense to continue to investigate, especially since the test, while annoying is not at all invasive or risky.

My kid had similar lapses and the neuro asked for an eeg that was negative and a sleep study that showed apnea. He was diagnosed with having episodes of microsleep caused by apnea.

But it sounds like she has ruled out absence seizures, due to the clinical picture and the hyperventilation test.

No. They are ruled out after the sleep deprived eeg which is why you do it. I can't believe this is the same forum who usually encourages all kinds of evaluations and recommends that everyone see a dev ped if they have issues. You don't do all that and then for some reason refuse to do a basic test to rule out seizures when they aren't that insanely rare at this age and cause what school has seen.

[Anonymous]

Don't mean to derail but am interested in experiences
with absence seizures. My daughter zones out and her pre k teacher has mentioned it it its not usually while walking or eating or anything. I have inattentive ADD and just assumed that's what we are dealing with. Is it worth seeing a neurologist?

Beth

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Also - almost all kids with epilepsy have adhd.

Person with epilepsy here. Have never ever heard this.

^^^ This. I've had epilepsy since I was a toddler and this is the most asinine thing I've ever heard, and Ive heard a lot of dumb stuff.

Given that it's four times higher in the epilepsy population, so around 40%, which is a huge percentage compared to the average population, it's not really the most asinine thing ever, is it? You should get out more.

Did you ever stop to think that it's selection bias? Kids under treatment by a neuro are more
Likely to be looked at for other neuro reasons and to undergo neuropsych testing. Or it could be the meds, not all of which have particularly pleasant side effects and small kids are generally not self aware to notice. I had ADHD-like side effects on Topamax, Keppra, Phenobarbital, and specific combinations of medications.

And your article pointed specifically to febrile seizures, which are not technically epilepsy. Those of use with specific syndromes (genetic) and other types of epilepsy don't count in that category.

Finally, I somehow doubt my 41 years with epilepsy and treatment at multiple research facilities (for near complete seizure control), places me in the category of needing to get out more.

[Anonymous]

Anonymous wrote:It sounds like overkill to me. Kids zone out.

You're mistaken if you think most kids zone out. Typically, it's those with identified special needs and neurological involvement.