Epilepsy and Covid

Log in / Sign Up

List of Forums + New Post Recipe Box Usergroups Following My Posts Bookmarks

Private Messages Advanced Search Rules New User Guide FAQ Advertise Contact Us

Forum -> Coronavirus Health Questions

Epilepsy and Covid

1 2 Next

View latest: 24h 48h 72h

amother

Sun, Mar 27 2022, 5:43 am

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

amother

Thistle

Sun, Mar 27 2022, 9:47 am

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

amother

Gladiolus

Sun, Mar 27 2022, 9:48 am

We have a daughter with epilepsy and autism. Our neuro said she wasn’t more at risk than anyone else.

amother

Oleander

Sun, Mar 27 2022, 10:02 am

I’m so sorry you were misled.
My teenage niece had epilepsy and she had covid in 2020 and she recovered 100% fine BH.

amother

NeonPink

Sun, Mar 27 2022, 10:43 am

Unfortunately a lot of people were misled about a lot of things regarding to COVID and no apologies or corrections were given.

amother

Bronze

Sun, Mar 27 2022, 10:47 am

amother [ NeonPink ] wrote:

Unfortunately a lot of people were misled about a lot of things regarding to COVID and no apologies or corrections were given.

So sad — tragic

amother

Sienna

Sun, Mar 27 2022, 10:52 am

They definitely didn't know who was really at risk. My formerly perfectly healthy teenage daughter now has a permanent chronic health condition post covid. We did not think to be extra careful Sad

amother

Aubergine

Sun, Mar 27 2022, 10:56 am

And what if they told you to lighten up and C”VS something happened? Would you not blame them?

amother

Alyssum

Sun, Mar 27 2022, 10:57 am

Chiming in here to say that I have epilepsy and had Covid last summer, I didn't experience a seizure at that time and recovered well (though took me some time to really feel all better). However, I did have a seizure when I had the flu a year before- meaning the flu or fever that came with it triggered a seizure. 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. I wasn't any more nervous about contracting covid than I am about contracting anything else- especially things that come along with a fever. BUT my seizures are very well controlled at this point. 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.

imasinger

Sun, Mar 27 2022, 10:59 am

My personal understanding is that there are enough effective treatments now that you may not have to worry unless there are also higher risk factors like asthma or other breathing issues.

But I'm not your DS's neurologist, and that is the person to be talking to, not a random group of imamother. You can also ask him why he didn't say anything different when you last spoke.

amother

Fuchsia

Sun, Mar 27 2022, 11:20 am

My daughter has very controlled epilepsy bh. She was never told to take any extra precautions. she had Omicron several months ago and it was like a bad flu for a couple of days.

amother

Fuchsia

Sun, Mar 27 2022, 11:24 am

[quote="amother [ Alyssum ]"]Chiming in here to say that I have epilepsy and had Covid last summer, I didn't experience a seizure at that time and recovered well (though took me some time to really feel all better). However, I did have a seizure when I had the flu a year before- meaning the flu or fever that came with it triggered a seizure. 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. I wasn't any more nervous about contracting covid than I am about contracting anything else- especially things that come along with a fever. BUT my seizures are very well controlled at this point. 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.[/qu

I think in general exhaustion, lack of sleep and any kind of weakness increases your likelihood of a breakthrough seizure.

amother

Alyssum

Sun, Mar 27 2022, 11:29 am

[/quote]
I think in general exhaustion, lack of sleep and any kind of weakness increases your likelihood of a breakthrough seizure.[/quote]
Yes and no- if I'm overall healthy I can live with very little sleep and do just fine, when my body is fighting something viral is when I generally I get the breakthroughs. So to say there's NO increased risk for epilepsy sufferer's is a broad statement- it's pretty individual. Which is the whole thing with Covid anyway, some people just get it bad and experience worse symptoms than others.

amother

Fuchsia

Sun, Mar 27 2022, 11:35 am

amother [ Alyssum ] wrote:

I think in general exhaustion, lack of sleep and any kind of weakness increases your likelihood of a breakthrough seizure.[/quote]
Yes and no- if I'm overall healthy I can live with very little sleep and do just fine, when my body is fighting something viral is when I generally I get the breakthroughs. So to say there's NO increased risk for epilepsy sufferer's is a broad statement- it's pretty individual. Which is the whole thing with Covid anyway, some people just get it bad and experience worse symptoms than others.[/quote]

True, my daughter is not really makpid on a certain amount of sleep and does very well. Some mothers of teenagers with epilepsy are militant about sleep schedules, I'm not sure weather out of necessity or fear? Either way when your body is in peak form the chance of a breakthrough seizure is
definitely lower.

Frumwithallergies

Sun, Mar 27 2022, 11:39 am

Generally, infections can lower the seizure threshold, particularly if one has fever.

Also, if someone has a refractory epilepsy (requiring three or more medications, and still having breakthrough seizures), they may have breakthrough seizures triggered by an infection.

amother

Bronze

Sun, Mar 27 2022, 11:47 am

Now we know that even if people
Are extra careful they are saying everyone will get it
B”H more treatments now and weaker variants
So challenging
Wishing everyone health!

amother

Honey

Sun, Mar 27 2022, 3:25 pm

[healthy] DS had 2 random eplilleptic attacks and when we were hospitalised they DID ask if he had covid. I think the research isnt really done yet

amother

Sun, Mar 27 2022, 4:00 pm

amother [ Sienna ] wrote:

They definitely didn't know who was really at risk. My formerly perfectly healthy teenage daughter now has a permanent chronic health condition post covid. We did not think to be extra careful Sad

Oy - I'm so sorry! May she have a refuah shelaima Hug

And please don't drive yourself nuts about not being "extra careful". Why would you have been, if she had no medical issues to start?

amother

Sun, Mar 27 2022, 4:17 pm

imasinger wrote:

But I'm not your DS's neurologist, and that is the person to be talking to, not a random group of imamother. You can also ask him why he didn't say anything different when you last spoke.

100% agree on talking to the doctor.

As I said in my original post, I was just researching online because I wanted to update myself on what the current guidelines/recommendations are before calling his office. I posted on here when I was horrified that no one official seemed to be advocating increased caution at this time. I'm sure someone must have initially, as I probably researched this online before, but the fact there was no such suggestions now threw me.

I figured maybe imamothers in different parts of the world (or who see different doctors in general) might have gotten similar recommendations to me, or might just have different thoughts to offer.

I'm not sure I'm going to kvetch about not being informed...I'll probably start with my initial question, which is what are the rules now given that Covid rates are dropping, and, depending on what he says then, mention what I've found online. Depending on how all that goes, I may ask what the office policy is in terms of updating patients on changes in Covid guidelines and ask to be informed if anything changes that they think is relevant to my son's care.

It may just be that the doctor thinks that in my son's case he needs to be extra careful, but if that's the case, I'd like to know why, so that I can make informed decisions as to what's right for my son and the rest of my household.

amother

Sun, Mar 27 2022, 4:42 pm

amother [ Aubergine ] wrote:

And what if they told you to lighten up and C”VS something happened? Would you not blame them?

I definitely hear the question, and it's a legitimate one. I feel like that's been the balancing act the whole way through - how to keep people safe, yet proceed with life, yet not (hopefully) regret it later.

Everyone in my household is fully vaccinated and boosted. Since Covid started, no one from outside our household has come into our home outside of emergencies, and the kids are only allowed to go to friends' houses where everyone is also fully vaccinated (yes, that's not a guarantee they won't have Covid, but I figure it ups the odds that their family is trying to be careful, too). No indoor dining, shul or day program for my son, the rest of the kids I've been letting follow local guidelines on those issues. We are all wearing masks in stores, shul, etc., even though local guidelines don't currently require that. As much as I'd love them to wear masks in school for my son's sake, I have to hear them too when they tell me they are uncomfortable being the only one is class wearing it, so I've been letting them follow the school rules for that. Yes, I'm my son's Ima, but I'm theirs, too...

I myself generally follow my son's rules, because as the person who's around him the most, I want to make sure I don't catch anything and give it to him.

I can deal with the restrictions on my son, and he's rolling with it for the most part, though he mentions his day program from time to time. We are home together during the day (no babysitters for him, no work for me except for when I can get work at home stuff) and I do what I can to keep him busy and take him out during time slots when I know the stores are not crowded, or take him out for walks when weather allows.

It's really more my others kids/spouse I'd like to set free a bit, if it's safe to do so. I can't see sending my son (he's my oldest BTW) to a day program where I have no way of knowing who there may have what and what he'll catch, especially as guidelines keep shifting and new variants keep appearing.

I hope I wouldn't blame the doctor - or myself, for that matter - if something went wrong. We are following the advice we are given, doing the best we can, and hoping and praying this will all be in the past soon. I think all we can do is do our best, and remember that we aren't in charge of any of this - all we can do is do our histadlus and let Hashem handle the rest.

Page 1 of 2

1 2 Next