Epilepsy and Covid

amother

Sun, Mar 27 2022, 4:52 pm

amother [ Thistle ] wrote:

My daughter has epilepsy. We were never told to be extra careful. Hers is bH controlled so not sure if that makes a difference.

We were well controlled too (maybe one seizure every year or so, and med adjustment took care of it) until a couple of years ago, when he started having more (3 or 4 a year). His neuro's office is working with us on it, but it seems like sleep and stress are big issues for him, and for him (and many others) those have gone a bit sideways during the pandemic. We are checking out everything his neuro tells us to, and getting all kinds of tests done, but so far those seem to be what needs work.

The other thing is - total side note here, sorry - he had multiple seizures just before Covid started within the space of a week or so. Turns out he had strep (that tends to set his seizures off) but I can't help wondering if the fact that he had a bunch made him more susceptible to having seizures in general. The neuro says that shouldn't be an issue, but who knows? (I had asked his regular doctor later on if it could be he just caught Covid and that was on top of the strep, but the doctor wasn't sure - this was in December 2019 so it was around but not really yet in our area).

amother

Sun, Mar 27 2022, 5:05 pm

amother [ Alyssum ] wrote:

Every time I get a fever or sickness I feel a drop more at risk for seizure activity. I don't mean feel more at risk emotionally- I mean I actually have aura's that are indicative of increased risk.

In short- I think for certain types of epilepsy contracting Covid does increase risk of seizures and depending on the type of epilepsy one is dealing with that does come with increased risk of ones overall health.

Right - same here - fever can set him off, same with strep, even if there's no fever. We keep tylenol/advil on hand, and if anyone else in the house catches strep we get him checked out as a precaution. When we've had household members catch Covid (B"H he didn't) we kept monitoring his temperature, and when he got the Covid vaccines/boosters we were advised to get the type that was less likely to cause fevers as a side effect, and to keep giving him tylenol/advil after the shot, just in case.

The thing is, I let him live his normal life when there's flu or strep in the community - same thing with colds, etc. We do our best to keep on top of things for him, but he and everyone else here go about their daily lives. I had been assuming - based on what I was told - that Covid is a whole different creature for him, and I'm wondering now if that changed, and what that means for him and our family.

Do you mind if I ask you if you are doing anything different, given that illness is a trigger for you?

amother

Cantaloupe

Sun, Mar 27 2022, 5:09 pm

amother [ OP ] wrote:

Apologies if this has been covered before...

My son has epilepsy (as well as autism). When Covid first started, we were advised by his neurologist to do our best to keep him Covid free, to treat him as someone at higher risk, and to handle things in our family/household with that in mind. In practical terms, it means we are a lot stricter in regards to Covid than most people we know.

Forward to lately - with rates of infection going down, with things getting better (at least until the next wave - sigh), some members of my household have asked me to look into if maybe we could all ease up a bit, and so I figured I'd do a bit of research before calling the doctor, so that I'd at least know what questions to ask and know where to start from. I've been checking reliable sites - CDC, various hospitals and epilepsy organizations, etc.

I don't know whether to cry or scream (right now hiding under the blankets sounds like a good plan) - everything I'm finding says that epilepsy is not an issue when it comes to Covid! I realize that as more information is found out and more time passes, doctors recommendations change, and that's probably what happened here, but seriously?! I last spoke to his neuro a few months ago when Omicron was starting up, and we went through precautions, what to do in case he caught Covid, etc. How could he not have told me that the rules had changed? And if the change is that recent, shouldn't he have reached out and let me know? How hard would it have been to have someone in his office reach out to his epilepsy patients and say that the guidelines had changed based on new research, that it was ok to loosen the reins, and we could call the doctor if we had specific questions? Or even have the nurse call with something more specific to my son's case?

Yes, autism is still on the list, but it seems to refer to people living in facilities or the fact that they may have issues take care of themselves, following health guidelines, etc., all of which we've been managing and could have just continued to manage without turning our lives upside down and inside out.

Yes, every case is different, and maybe I'm missing something here - which is my main point in posting all of this (the vent is secondary). Has anyone heard differently? Are any of you dealing with epilepsy being given any advice by your doctor(s) as far as epilepsy and Covid concerns, and if so, what have you been told? How is it different than what you were told when all this started 2+ years ago?

Thanks everyone - all info appreciated

That's what we were told and I didn't buy it.

It doesn't make sense. At all. COVID has neurological effects. You going to tell me it doesn't affect epilepsy? All that means is that no one bothered doing the research.

amother

Sun, Mar 27 2022, 5:22 pm

amother [ Cantaloupe ] wrote:

So you were told not to worry about Covid? Were you told that recently or in the beginning of all of this?

I don't know if no one is researching or if everyone is trying to play catch up/take their best guess until the research is actually done. Science takes time, but our families are dealing with this NOW and need some type of answers now. The fact that researchers will know a lot more a decade from now may be understandable, but it unfortunately doesn't help us right now.

amother

Alyssum

Sun, Mar 27 2022, 5:31 pm

amother [ OP ] wrote:

Do you mind if I ask you if you are doing anything different, given that illness is a trigger for you?

No not really, I'm a busy mom with lots of young kids b'H, I'm gonna get sick. BUT I've been really careful to not skip any doses, I kind of slacked off at one point, fell asleep without taking my night medicine a few times and noticed aura activity. I also make sure to have my levels checked to make sure my dosage is correct. But I'm in my 30's and keenly aware of when I'm getting aura's. So much harder for kids who can't verbalize how they are feeling or even aware of aura's etc.
I can tell you that I'd really rather not get covid again (please Hashem). The flu was horrible, but covid left me with weeks of brain fog and months of not feeling quite right. I honestly don't think it has anything to do with my epilepsy, I think I'm just old lol. My kids fared just fine b'H.

amother

Mon, May 02 2022, 2:36 am

Bumping this up again, as the whole "reach out to the doctor" bit went on hold with Pesach prep (not to mention people in our neighborhood started catching the latest variation, so we wouldn't have wanted to be less careful right now anyway).

So...same question once more (hoping to schedule an in person appointment with the doctor for next month, so I'm back to collecting info) -

Has anyone been given info specifically about dealing with Covid, being more restricted re Covid precautions, etc. because they or a family member are dealing with epilepsy?

Thanks!

amother

Mon, May 02 2022, 3:40 am

amother [ Cantaloupe ] wrote:

That's great, your family was lucky. We were misled in the other direction. We were told our child with epilepsy isn't at greater risk, but the covid took a child who was 100% seizure-free thanks to medication and now we have seizures multiple times a week.

Because covid impacts the nervous system and so there are no guarantees. How about not call anyone saying "we don't know, be extra careful" "misleading" and get off your haughty high horse that covid is nothing.

I was just thinking about you - how's your daughter doing? How are you doing with all of this???
Hug