DD (15) had a seizure last night (she's okay, but...)

[OH_Homeschooler]

I'm just so tired. I feel like this poor kid never gets a break. She's been hospitalized twice this year for suicidal ideation. I admit to thinking while she was seizing, "Oh no, she actually tried this time." But fortunately, no. I keep her medicines locked up and checked a few other places where there could have been pills, but she didn't take anything. I took her temperature thinking maybe she had a fever, but no.

She had been pretty down yesterday, and just sat at dinner staring at her plate. She said she felt nauseous, but she's prone to anxiety and stomach issues and it was Sunday night so I figured it was just having to go to school (the same way I have anxiety about work on Sunday nights, even when everything is going okay). Then she went to the couch and fell asleep watching YouTube on her phone. I was in the next room and heard these growling sounds and thought she was having a weird dream, then I saw that she was convulsing. It was dark in the room but her lips looked blue. 

I called 911. The younger kids were freaking out. She stopped seizing, but her breathing was labored. She wasn't responding to anything, which I guess is normal. She was taken to the ER by ambulance, they ran tests but couldn't find anything wrong. I suppose/hope it was just a random thing. But then again, I'm always looking for connections between issues she's had, like maybe this could explain everything. Maybe the seizure even reset her brain and her chronic depression will finally go away. Isn't that sort of the point of ECT? 

We got home late last night. She is home today, feeling really tired with a headache. It was just really scary. I need to call the neurologist today. Anyone BTDT? Any advice or virtual hugs? 

 

[WildflowerMom]

You mentioned she just stares at her plate... is she eating?  If not, this could’ve been a hypoglycemic seizure.   If she’s not eating much, you might want to get a blood sugar monitor (Walgreens has them) and check it when she’s feeling crappy and not eating much.  A coke or other soda will bring it up.  
 

big huge hugs....  going through mental health stuff now.  It is a beast.  

[mommyoffive]

Oh I am so sorry.  Sending lots of hugs your way and prayers to your dd.  I am sorry she is going through so much.  Calling nero is a good first step. 

[Ali in OR]

Was this the first time she had a seizure?

Unfortunately I have way too much experience with seizures. I know how scary it is, particularly when it's not been part of your normal. And I know that feeling of hoping to get the information that will explain everything. I do hope you find out more about what's going on and can get your dd to a level of stability with seizures and with her other challenges.

[Scarlett]

I am so sorry.  I don't really know much about seizers.....my best friend had a Grand Mal seizer.  She said just before it happened she was at the table eating dinner with her FOO.  She was there because her then husband had told her he was trying to decide if he wanted to stay married to her or go off with his girlfriend.  She said she remembers that she was thinking about him and got incredibly sad and that is the last thing she remembers.  So I have always tied that seizure to extreme emotional distress.  However, she was also on some anti depression drugs (for the same situation---cheating husband) and I think one of them was tied to seizures.  All of that rambling to ask, could one of her current meds have led to the seizure?

 

[Innisfree]

I'm so sorry. No advice, just hugs. I hope you can get some helpful information today.

[OH_Homeschooler]

15 minutes ago, WildflowerMom said:

You mentioned she just stares at her plate... is she eating?  If not, this could’ve been a hypoglycemic seizure.   If she’s not eating much, you might want to get a blood sugar monitor (Walgreens has them) and check it when she’s feeling crappy and not eating much.  A coke or other soda will bring it up.  
 

big huge hugs....  going through mental health stuff now.  It is a beast.  

 

She does have some disordered eating (I hate to say it's an eating disorder, but this is one of the issues she is seeking treatment for). When she said her stomach was bothering her at dinner I asked what else she'd eaten that day, and she had cereal. So it is definitely a possibility that her blood sugar was too low because it was around 5:30 and that was all she'd eaten all day. And she barely ate dinner because she wasn't feeling well. 

She is an x-small and feels like she is huge. 😞

10 minutes ago, Scarlett said:

I am so sorry.  I don't really know much about seizers.....my best friend had a Grand Mal seizer.  She said just before it happened she was at the table eating dinner with her FOO.  She was there because her then husband had told her he was trying to decide if he wanted to stay married to her or go off with his girlfriend.  She said she remembers that she was thinking about him and got incredibly sad and that is the last thing she remembers.  So I have always tied that seizure to extreme emotional distress.  However, she was also on some anti depression drugs (for the same situation---cheating husband) and I think one of them was tied to seizures.  All of that rambling to ask, could one of her current meds have led to the seizure?

 

 

I was definitely considering these issues as well. She's a perfectionist and is a little behind in school due to the hospitalizations, and I know she was planning to get caught up on a lot yesterday. And it has been so gloomy for days on end, and she was just sad yesterday. So I can imagine that added to her stress level, thinking she could get caught up and then not being able to focus at all. 

She has had some changes to her anti-depressants lately, mostly they tried an add-on (Latuda) but took her off of that. I wonder if it's almost like whiplash, trying new things, taking her off. She's been on Lexapro for years without any major issues. She already has an appointment with her psychiatrist for this week so we will definitely bring this up. He noticed in her last appointment how very fidgety she was.  

She also has PTSD from sexual abuse so she is on a medication they give to war veterans for nightmares. That is a pretty new medication too, but it's been a few weeks. I think the studies are pretty iffy on its effectiveness but I've been going along because I'll try anything that helps at this point. 

She is really this amazing girl and will accomplish great things, if she can only get to adulthood. She's good at everything she tries, but she hates herself. And last night in the ER I was actually more relaxed than when she was being committed because I know seizures can be really serious but at least there are things you can do for them. I feel like we're at the end of our rope with the mental health stuff.  

 

Oh and yes, this was the first seizure. Hopefully the last. 

[Kassia]

I'm so sorry.  I can't imagine how hard this all is on you. 

 

[prairiewindmomma]

My daughter used to feel poorly just before her seizures, and then take a few hours to recover afterwards.

Call the neuro. Don't be surprised if they don't ever find a direct trigger.  Sometimes seizures just happen. 

I'm sorry things are hard right now.

[Katy]

No advice, just hugs.

[ktgrok]

You probably should look into neuropsychiatric stuff....there are say, autoimmune diseases that can cause brain inflammation with the main symptoms being brain fog, depression, anxiety, OCD, etc, and when more severe cause encephalitis related seizures. Autoimmune Encephalitis is something that is only recently being taken seriously....it often manifests mostly as psychiatric in nature, meaning people are not properly diagnosed and treated. There are stories of people diagnosed schizophrenic who are "fixed" with steroids, etc. 

At the very least, I'd want someone doing labwork to rule out celiac and lupus, and looking for any other autoimmune markers

Edited April 12, 2021 by ktgrok

[OH_Homeschooler]

6 minutes ago, prairiewindmomma said:

My daughter used to feel poorly just before her seizures, and then take a few hours to recover afterwards.

Call the neuro. Don't be surprised if they don't ever find a direct trigger.  Sometimes seizures just happen. 

I'm sorry things are hard right now.

Thanks, I think I just need to adjust my expectations and realize things will never be calm. I keep thinking "okay, that was the big thing but now we're over it" and then the next thing comes up. I know that sounds grim but expectations really shape reality, and I won't be so upset when things don't go as I expect. 

I called the neuro they referred us to but he does not see kids under 16. I made an appointment with our GP instead, perhaps I will get a referral.

From my internet searches while waiting last night, I figured that we probably won't get an answer on what the trigger was. But now that she has experienced one, we have a frame of reference for how she was acting and feeling before it happened. 

Thanks.

[Jann in TX]

I have a dd who is going through similar (NEARLY IDENTICAL) issues (her first seizure was just over a year ago-  It is extremely possible that your dd experienced a PNES seizure-- these are non-epileptic seizures (your body's reaction to excessive anxiety/stress).  Not life threatening-- but can be life-altering.

If it was a PNES seizure it does not alter brain chemistry (meaning no reset).

LOTS of hugs headed your way--You can PM me if you would like.  It can be VERY difficult to find out information about this disorder-- and even harder to find a DR who knows how to treat it... most likely they will shuffle meds in a poor attempt to do something-- then recommend counseling and stress management....

wanted to add--My dd can 'feel' when one is about to start-- usually just a few seconds so in most cases she has time to get herself into a safe position...

 

 

Edited April 12, 2021 by Jann in TX

[ktgrok]

I'd also make sure you see someone who knows about PANDAS - fidgety can be tics, or can be Choreiform movements which are associated with brain inflammation. Our first neuro didn't even look for this stuff, but the neuropsych did - and picked up on it in my son. 

Can you look for a neuropsychiatrist (not psychologist)? That would be the person who would know about how the mental health and physical stuff connect. 

[OH_Homeschooler]

4 minutes ago, ktgrok said:

I'd also make sure you see someone who knows about PANDAS - fidgety can be tics, or can be Choreiform movements which are associated with brain inflammation. Our first neuro didn't even look for this stuff, but the neuropsych did - and picked up on it in my son. 

Can you look for a neuropsychiatrist (not psychologist)? That would be the person who would know about how the mental health and physical stuff connect. 

Possibly, but we're so overwhelmed right now with counseling, groups, and her regular psychiatrist to help get her other issues under control. May consider that in the future though.

[OH_Homeschooler]

6 minutes ago, Jann in TX said:

I have a dd who is going through similar (NEARLY IDENTICAL) issues (her first seizure was just over a year ago-  It is extremely possible that your dd experienced a PNES seizure-- these are non-epileptic seizures (your body's reaction to excessive anxiety/stress).  Not life threatening-- but can be life-altering.

If it was a PNES seizure it does not alter brain chemistry (meaning no reset).

LOTS of hugs headed your way--You can PM me if you would like.  It can be VERY difficult to find out information about this disorder-- and even harder to find a DR who knows how to treat it... most likely they will shuffle meds in a poor attempt to do something-- then recommend counseling and stress management....

wanted to add--My dd can 'feel' when one is about to start-- usually just a few seconds so in most cases she has time to get herself into a safe position...

 

 

Thank you. PNES was something I saw last night that I wanted to look into when I wasn't just on my phone. I will definitely check into that a bit more. I'm sorry you've been through all this too but I appreciate knowing I'm not alone. 

[ktgrok]

16 minutes ago, OH_Homeschooler said:

Possibly, but we're so overwhelmed right now with counseling, groups, and her regular psychiatrist to help get her other issues under control. May consider that in the future though.

Something to keep in mind, especially if other measures are not helping mental health like they should - in case the depression, etc are actually symptoms of an autoimmune issue. Regular GP can order bloodwork for celiac, lupus, inflammatory markers, something you can ask for when you go? Even boring old celiac can cause seizures, with neurological involvement in about 10 percent of patients. And it is linked to depression, anxiety, etc. 

[hippymamato3]

2 hours ago, OH_Homeschooler said:

 

She does have some disordered eating (I hate to say it's an eating disorder, but this is one of the issues she is seeking treatment for). When she said her stomach was bothering her at dinner I asked what else she'd eaten that day, and she had cereal. So it is definitely a possibility that her blood sugar was too low because it was around 5:30 and that was all she'd eaten all day. And she barely ate dinner because she wasn't feeling well. 

She is an x-small and feels like she is huge. 😞

 

I was definitely considering these issues as well. She's a perfectionist and is a little behind in school due to the hospitalizations, and I know she was planning to get caught up on a lot yesterday. And it has been so gloomy for days on end, and she was just sad yesterday. So I can imagine that added to her stress level, thinking she could get caught up and then not being able to focus at all. 

She has had some changes to her anti-depressants lately, mostly they tried an add-on (Latuda) but took her off of that. I wonder if it's almost like whiplash, trying new things, taking her off. She's been on Lexapro for years without any major issues. She already has an appointment with her psychiatrist for this week so we will definitely bring this up. He noticed in her last appointment how very fidgety she was.  

She also has PTSD from sexual abuse so she is on a medication they give to war veterans for nightmares. That is a pretty new medication too, but it's been a few weeks. I think the studies are pretty iffy on its effectiveness but I've been going along because I'll try anything that helps at this point. 

She is really this amazing girl and will accomplish great things, if she can only get to adulthood. She's good at everything she tries, but she hates herself. And last night in the ER I was actually more relaxed than when she was being committed because I know seizures can be really serious but at least there are things you can do for them. I feel like we're at the end of our rope with the mental health stuff.  

 

Oh and yes, this was the first seizure. Hopefully the last. 

I just want to say that I feel every word of what you wrote here. The ups and downs of mental illness are heart wrenching. You can PM if you'd like. I've been there. I'm still there sometimes. Today is an ok day. I live for those days.

[prairiewindmomma]

1 hour ago, OH_Homeschooler said:

Thanks, I think I just need to adjust my expectations and realize things will never be calm. I keep thinking "okay, that was the big thing but now we're over it" and then the next thing comes up. I know that sounds grim but expectations really shape reality, and I won't be so upset when things don't go as I expect. 

I called the neuro they referred us to but he does not see kids under 16. I made an appointment with our GP instead, perhaps I will get a referral.

From my internet searches while waiting last night, I figured that we probably won't get an answer on what the trigger was. But now that she has experienced one, we have a frame of reference for how she was acting and feeling before it happened. 

Thanks.

Hugs.  I would reframe it to, "Every day she is still with us is success." Seriously. When you're dealing with suicidal ideation, that is true.  You're on a different road than many experience, but it can still be good, even though it's long and steep and windy at times.

I would look for a ped neuro based out of a good children's hospital.  We had to drive a bit when we lived in the Midwest, but this one is worth going to a good hospital for--not only for the ease in coordinating care (sharing labs, etc.) but because you want someone with good rapport and who sees a lot of teens. Neurologists are a quirky lot, as a general rule, and not the most personable of doctors.  Our neurology department had a special teen clinic, fwiw, and saw people to age 21.

[Soror]

No advice, lots of hugs.

[Melissa in Australia]

Hugs

 Twin 2 had a big seizure 2 years ago. It was very scary. We had brain scans etc. The paediatrician said that sometimes people have a brain overload and a shut down with a seizure and it is a complete one off and never happens again. 

[Ottakee]

She needs follow up with a great neurologist. 

One thing that worked her is Lamictal. It is a seizure med that also treats depression and mood disorder.   

There is a lot of overlap with mood issues and seizures.

[Scarlett]

Any update?