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[alisoncooks]

Thanks for the thoughts.

Edited July 27, 2022 by alisoncooks

[Mergath]

That's normal. And I've had epilepsy since I was a kid, so I'm speaking from experience here. 

 

Two or three seizures a year isn't actually that many. I mean, it's not ideal, but it's not horrible. Unless something showed up in the testing, that's really all they can do. Idiopathic epilepsy isn't uncommon.

[displace]

After a first seizure, the family should know seizure safety (what to do for a seizure, meds if any, when to call 911, etc). My understanding is the majority of seizure disorders are not diagnosed as far as why. Some are, which is why eeg’s and mri’s are done, as well as labwork, to help know if there are reasons for a seizure. After the initial workup, just medicines are given if necessary to try to prevent seizures.

 

Idk is seizure disorders qualify for Medicaid or disability, but the neurologist may know.

[Clemsondana]

My sibling and I both had childhood seizures (although the onset was a bit older - one of us was 9). Sibling's had a known cause, and tended to be severe. Mine were much less severe, and the cause was never found. We both took medicines that controlled them almost completely - if a seizure occurred, they upped the dose. But, we were lucky. We knew people who would have been thrilled to get down to 2-3 seizures per month, despite trying everything under the sun. Both of us eventually outgrew them - we quit taking medicines in college, and probably could have earlier but the doctors were hesitant to mess with something that we'd been taking for so long at a time when we'd have a lot of new stress and be far from home.

 

That being said, anti-seizure medicines have a lot of side effects. If the frequency isn't disruptive, a child may be better off with minimal medication. Sibling and I had very different side effects because the doctor chose different medicines for us based on what was important to each of us - not losing mental alertness for academics for one, not being sluggish for sports for the other. But, no matter what you take, you'll be dealing with something. I an imagine a doctor not wanting to do something that rewires the brain of a toddler if they can avoid it.

Edited November 25, 2017 by ClemsonDana

[sassenach]

My first question would be are you positive that they’re grand mals? I ask because a lot of people don’t understand just how many different types of seizures exist, and how different the urgency/expectation of total control is, so if you’re getting your info from other relatives (grandma, etc) you might not have accurate info on the type of seizure.

 

Secondly, yes, it’s normal to not gain total control. There are a number of different seizure meds out there, but the process of doing trials can be quite lengthy. First you have to titrate on, then fuss with the dose, then wait and see how the patient does, adjust, watch, adjust, then titrate off if it doesn’t work. Rinse, repeat.

 

If he’s having 1 seizure every 4 months, that’s a lot of watching and waiting before you know how he’s fairing. Then, of course, kids grow and you have to adjust again.

[unsinkable]

I'm just curious and telling a cautionary tale... My daughter's good friend had a seizure in the late summer of 2016. They did testing, including EEG's and such and didn't find anything. She had another one in November and when she went in they didn't see anything but told her to film her having her next one.... Her daughter was a senior in high school and so she had her sleep with her mom. A few days after Thanksgiving she had another one, so the mom filmed it.... only to figure out in a few minutes that her daughter wasn't breathing... The ambulance came but it was too late. She was brain dead that day, though it took them another 4 or 5 days to determine that for sure. So she died from seizures and her mom has gone on a big crusade. She hadn't had seizures before that. She died almost exactly a year ago, a beautiful girl and talented young lady. We all still miss her.

 

So my opinion is to get a second opinion.

I'm very sorry about the death of this young lady.

 

If a teen presents as having a seizure, with no prior seizures, and no family history, and nothing on exam, either EEG, CT or MRI, she more than likely will NOT be medicated.

 

The second seizure, might not be medicated either, especially if both of the seizures stopped in their own. IOW, she wasn't found seizing and needed medical attention and meds to stop the seizures.

 

Some things that look like seizures are NOT bc of epilepsy. So it isn't unusual to try to catch what is happening in video.

 

There is no way of knowing, based on your story, what happened with this girl.

 

It is also quite different from what alison's nephew is experiencing. He IS being medicated. He is having breakthrough seizures. Maybe the doctors need to adjust his meds. Maybe they need to try a different med. Or maybe the breakthroughs occurred when the little boy's threshold was lowered ( bc of illness or hunger or lack of sleep, etc) and that is why the medical staff thinks the breakthrough seizures are acceptable for that child.

 

The one thing I will say is that people with epilepsy should have a rescue medicine/emergency medicine. And in alison's nephew's case, I hope his mom DOES have one.

[Mergath]

I'm just curious and telling a cautionary tale...  My daughter's good friend had a seizure in the late summer of 2016.  They did testing, including EEG's and such and didn't find anything.  She had another one in November and when she went in they didn't see anything but told her to film her having her next one....   Her daughter was a senior in high school and so she had her sleep with her mom.   A few days after Thanksgiving she had another one, so the mom filmed it.... only to figure out in a few minutes that her daughter wasn't breathing...  The ambulance came but it was too late.  She was brain dead that day, though it took them another 4 or 5 days to determine that for sure.  So she died from seizures and her mom has gone on a big crusade.  She hadn't had seizures before that.  She died almost exactly a year ago, a beautiful girl and talented young lady.  We all still miss her.

 

So my opinion is to get a second opinion.  

 

Seizures can be dangerous, to be sure. If I have a seizure now, my dh has to call an ambulance because the last couple times I've gone into status. 

 

However, if there's no apparent cause for the seizures, there isn't much else you can do besides try to control them with meds and lifestyle, and watch the person. It's tragic and heartbreaking that this woman's daughter died, but the sad reality is that people do sometimes die during a seizure and there really isn't any way to prevent it. 

[Ali in OR]

It would be fine to talk to the niece to find out what exactly has been done. Her son should have been referred to a neurologist who should have done an EEG. There should have been a discussion between the parents and the neurologist on whether the present number of breakthrough seizures is acceptable or whether they want to aim for better control with a higher dose or by adding a second anti-seizure medicine. As noted by other posters, there are pros and cons to weigh with more medicine, and it is quite possible that the family and doctor have decided that the status quo is good enough, especially if the child is meeting developmental milestones as expected.

 

We have never had total seizure control with our dd. I used to comment that we never went a calendar month without a seizure, but that's not really true anymore--she can be fairly stable over the summer or winter. She is on 3 anti-seizure meds and I'm actually happy with the level of control that we have. Her seizures are something we live with and hers are not a medical emergency. We will always ask "why today?" and analyze her sleep patterns, check for illness, etc., but as long as it's just a seizure or two per month, it fits her pattern of normal.

[alisoncooks]

....

Edited December 16, 2017 by alisoncooks

[Ali in OR]

If she is frustrated and doesn't feel like there's a good plan in place, she should keep fighting the medical system. And it can be hard even with insurance. If she is not comfortable with the number of seizures, she should definitely schedule a follow-up appointment with the neurologist to discuss options (and it can take a few months to get in). 

[Mergath]

Thanks for all the feedback. My niece does have emergency medicine for her son (like Valium?). I'm not sure what testing has been done but I know niece feels frustrated and helpless about where they are in the process.

 

Maybe it'll help her to know that some waiting is typical, as well as some breakthrough seizures. I think she's pretty stuck with the medical provider they have. She's living with a friend (with the 4 yr old and a newborn) and she doesn't have a car. She also has to go wherever Medicaid is accepted.

 

Probably Ativan. That's what I use to try to prevent seizures if I start having auras.

 

Has she reached out online to other people going through something similar? She'll probably feel better if she chats with other parents and sees them having to wait and watch, too. And if she can find a local group, she might be able to get more info about insurance and resources.

[LostSurprise]

A preschooler with idiopathic (not physically explainable) seizures who has breakthrough seizures on a medication is not too uncommon. 

 

If your niece has a neurologist, I would encourage her to start a list of questions. 

 

Some possibilities:

 

*has the child had an EEG 

*has that EEG caught any unusual activity

*does he have a diagnosis

*if not, would an overnight or 3 day EEG help them get a diagnosis

*at what point do they suggest an MRI or genetic testing

*at what point is it a good idea to change medications

*what seizures types are there and what do they look like

 

I'd suggest your niece watch her son fall asleep or wake up (sleeping in the same room helps with this) for a week or two. The brain is really susceptible to seizures at that time so she may see seizure behaviors. Any unusual tightening/loosening of muscles, staring eyes, smacking lips, raised arms, enlarged pupils.  If he has other seizures types she should either take a video or write out a description for the neurologist and call their office the next day. 

 

All that said, a breakthrough seizure of a single type every 3 or 4 months which lasts only a few minutes isn't considered too serious, usually. The medication is doing its job fairly well and perhaps something outside is affecting him (food, sleep, sickness, heat/cold). I like to add them to the calender with notes to help me guess at influences over time. She should definitely report if they start happening more often, stay longer and harder, come in other types, or start to affect his behavior or development. 

 

She can also request a copy of any labs, tests, and notes. They can help with more questions next time. 

[sheryl]

I would like to add (not sure if it's been mentioned) that a wtm by the name of Asta (where the heck are you?) was very helpful as was Mergath.  Asta has epilepsy as well and mentioned for a child to be seen by a "pediatric" neurologist not as any neurologist.  And, even more specific is a pediatric neurologist who specializes in epilepsy.  Once the child is 18 they should be moved to adult neurology.

[SparklyUnicorn]

Granted that was many years ago, but my mother had frequent seizures as a kid.  They didn't do a whole lot about it.  Interestingly, she never had one as an adult.

 

 

[gardenmom5]

Ds's gf has poorly controlled epilepsy, because she doesn't respond to standard treatment. She's constantly in and out of Dr's since she was diagnosed.

They think she's an interesting case.

[rmtzc2009]

We we're given a rectal med (Valium) to give if DS seizure lasted more then three minutes.

 

We never had to use it as his seizures typically stopped around 2 mins. So I can't say if it would have helped.

[SparklyUnicorn]

We we're given a rectal med (Valium) to give if DS seizure lasted more then three minutes.

 

We never had to use it as his seizures typically stopped around 2 mins. So I can't say if it would have helped.

 

Wow, that sounds challenging.  So one is supposed to administer this med while the kid is having a seizure? 

[Hilltopmom]

Wow, that sounds challenging. So one is supposed to administer this med while the kid is having a seizure?

Yes, it’s an emergency rescue med.

not difficult at all, really.

My kiddo would usually respond to a second dose of rescue meds, but other times would get stuck in status (seizures lasting hours) and wind up inpatient for IV meds instead to stop them when breathing started getting wonky.

[displace]

Wow, that sounds challenging. So one is supposed to administer this med while the kid is having a seizure?

It’s typical. Medicine can’t be given by mouth during a seizure.