My son had a seizure. I'm scared. - Mothering Forums

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#1 of 18 Old 10-23-2010, 10:40 AM - Thread Starter
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My 4 year old son woke up yesterday morning in rare form. My active, spirited, spit-fire was limp, unable/unwilling to walk, muttering incomprehensible things, asking for water but was too weak to actually drink more than the tiniest sip and was constantly falling back asleep...his eyes were rolling back in his head and his face and lips were all the same color. He had no fever, no other symptoms. He stayed in this "state" for approx. 1 hour before he very gradually returned to normal. We immediately saw the doctor. I assumed he was very, very ill and was deeply concerned (panic stricken). However, she assessed him and immediately said "postictal". His blood sugar and hemoglobin were within the realm of normal. His temp was 98.1, but he was still uncoordinated, exhausted and pale.

He sleeps with my husband, our baby and I so I know he didn't get into anything. (Our medications are kept in a cabinet that he is incapable of reaching and the only chemical he could have had access to is bleach. However, I offered a drug screen if she wanted to rule out the remote possibility that he had gotten into something...she agreed that it was extremely unlikely and mentioned that the way he was "rebounding" only reinforced "postictal"...she brought in a neurologist who agreed.

My son had a seizure. In his sleep. I was so scared when we arrived at the doctor that this news seemed relieving...until now.

We have been to two hospitals, had blood work, an EEG and an appointment scheduled with another pediatric neurologist in a big city hospital (2.5 hours away) for the following weeks.

Our pediatrician was wonderful...honest, well informed, very black and white and very reassuring. She said she did not think he was in any danger. She told me to watch him carefully, explained what to do if he had a Grand Mal seizure. She said he may not seize again for years...months...weeks or days. Of course, the opposite is also true. She didn't expect the EEG to find anything abnormal and said many kids have normal results between several seizures. However, we're going to meet with the pediatric neurologist for a thorough appointment at her recommendation.

I can handle this...but I'm scared. I've been reading all night and I didn't sleep at all (I stared at my boy all night) I can handle seizures but I can't handle the unpredictability of this whole thing. Maybe it was a one time thing?! But why?? He isn't sick, he has NO other symptoms, and just as the doctor predicted he was completely normal by mid-day yesterday. Thankfully he was fine this morning as well.

Has anyone else experienced anything like this? What do I expect? Why would something like this occur one time, with no warning and never return?

Carolina, tree hugging, treehugger.gif animal loving, backyard chicken keeping, Wife to Dh, homeschooling Mama to Ds1(Aug '06) and Ds2 (Nov '09)

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#2 of 18 Old 10-23-2010, 01:17 PM
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I couldn't read your post without saying that I am sorry this happened and hope that your DS is better. I don't have any experiences with seizures in my family, but have seen them with patients when working as a PT. Good Luck with the testing and waiting.
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#3 of 18 Old 10-23-2010, 06:24 PM
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I'm so sorry to hear you guys are going through this

I hope you don't mind me asking, but has he been vaccinated recently?

I only ask b/c a friends son developed seizure after his first set of vaccines at a year old, so it's always on my radar now.

I hope you can get some answers soon, and he continues to improve.
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#4 of 18 Old 10-23-2010, 09:51 PM
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s I'm just going to tell you *my* story, k? Maybe it'll re-assure you. Maybe not. Anyhow... her goes.

I had *one* grand-mal/tonic clonic (same thing, different names) seizure when I was 6.5 - it apparently lasted for hours/days, folllowed by a coma for aprox 10days-2wks (Obviously, I don't remember any of this... the last thing I remember before waking up in a hospital bed surrounded by stuffed animals was eating green jello and being vaguely sick... though I don't honestly know if that was immediatly before the seizure or days or weeks or months before. At this point, nobody else remembers either ). I'm honestly also not sure how long after I woke up we were in the hospital for (my dad stayed with me the *whole* time, while my mom apparently was having a mental break down... and in the hospital herself... and my brother stayed at my grandparents' 3 or 4 hours away.) My doc always told me I was the 'miracle child' - I honestly suspect there are probably journal articles out there written about me, somewhere - apparently, I wasn't 'supposed' to wake up, let alone go on to live a perfectly normal life .

I'm 26 yrs old now... and I've never had another, at least, not another outward seizure. One of my friends has told me that she thinks she saw me have seizures (just the kind where you go blank'n stare off into space though) in high school. I was on phenobarbitol from the time I was 6.5 though till I got pregnant w/ ds1 (now 3.5... so a little more than 4 yrs ago at this point), when I weaned myself off it. I also haven't seen a neuro in nearly 4 yrs now, mostly cause' the last time I saw one DH & I were told I was an idiot for getting pregnant on phenobarb, but I was also an idiot for weaning myself off of it. :boggle:

Honestly, the only way its really affected my life are in two ways:

1) It was a major, major, major PITA to get my initial drivers license (though I've never had issues renewing... ). And it was at that point that I realized I'd never be able to be a pilot something that had been a major goal in my life up till that point.

2) I wasn't allowed to scuba dive in college, and had to suffice w/ snorkeling. But I got *DARN* good at snorkeling. And I saw a lot more sharks than anybody else, cause' I got in the water FIRST!!
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#5 of 18 Old 10-23-2010, 09:52 PM
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I'd think they will do a sleep EEG perhaps. My son had that (he wasn't have seizures but they thought perhaps).

I am really posting though I can't help from experience to tell you that moms on the special needs board will have seizure experience and you might cross post there.

Rachelle, mommy to 8 year old boys! 

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#6 of 18 Old 10-23-2010, 10:02 PM
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I don't have any advice, but I am so sorry you had to go through that. I had nightmares for weeks after my sons siezure and it was just a fever seizure.

I hope you are all able to rest tonight.
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#7 of 18 Old 10-23-2010, 11:47 PM - Thread Starter
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Thank you for the responses. We don't vaccinate and there were no obvious warning signs...

The more I read, the more I worry that I've missed seizures in the past. It would explain a lot of his night time "issues" and some of his blank staring that I chalked up to "zoning out" but it could also just be coincidental and my hyper awareness.

I've never experienced the type of fear I had that morning and I wouldn't wish it on anyone else.

Carolina, tree hugging, treehugger.gif animal loving, backyard chicken keeping, Wife to Dh, homeschooling Mama to Ds1(Aug '06) and Ds2 (Nov '09)

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#8 of 18 Old 10-24-2010, 03:31 AM
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Sorry that your son has to go through this. Did he have any previous head trauma that you could have overlooked? Like accidentally falling on his head while playing outside or at school (if he is in school)? Or was he on any medication like antibiotics? My friend's son started having seizures after he was given antibiotics that were too strong for him.
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#9 of 18 Old 10-24-2010, 08:52 PM - Thread Starter
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He has had no previous head trauma and he's on no medication. I haven't slept since Friday. Last night I watched the rythmic spasms and jerks of what appeared to be a myoclonic seizure. At the advice of some others I plan to try to record any more nocturnal seizures in order to show the pedi neuro when we have our appointment.

I'm just beside myself...I don't know how long this has been an issue that we weren't aware of and I'm terrified about the potential for this to progress. I know we can handle this and my resilient little man will be fine no matter the official diagnosis/prognosis.

I just wish we had more answers. I suddenly feel alone though I know seizures aren't terribly uncommon, I feel like my son is a time bomb.

Carolina, tree hugging, treehugger.gif animal loving, backyard chicken keeping, Wife to Dh, homeschooling Mama to Ds1(Aug '06) and Ds2 (Nov '09)

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#10 of 18 Old 10-25-2010, 01:08 PM
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I'm so sorry, I know it's so hard to see your little one suffering and to not know what's wrong.

My son siezed in my arms when he was nursing at 18 months old. He was extremely unresponsive after that for a long time. We called an ambulance and went to the hospital. He had another while they were checking him over. They told me it was febrile, but he had not been sick, nor did he have a fever prior to the seizure.

My pediatrician agreed that something more was going on, so we were going to keep an eye on it.

A month later, he had another, and we were going to go to the dr on Monday, but when he had the 2nd, we went to the ER. They found he was hypocalcemic and his vitamin D was almost non-existent. He was in the hospital for a week recieving intravaneous calcium and vitamin D before they let us go home. We continued Vit D therapy for a year before they felt his levels were stabilized enough. They never found any underlying cause, and we took him for a second opinion even - still nothing. They said it was because he was exclusively breastfed, and that I most likely did not pass on enough Vit D to him while pregnant - even though my levels are normal. I nursed through my pregnancy with him and wonder if that had anything to do with it. But we'll never know for sure. He got plenty of sunlight - we all did - spending hours outside every day without sunblock, and we lived in TN.

He seems to be fine now, but we continue to give him supplements and test him every year. He's still on the low side, but he hasn't had any more seizures. I still worry about any damage that might have been done, and it scares me to not know what the cause was... our first son was raised exactly the same, same place, same feeding, everything and he was fine.

I hope you're able to find out the cause.

~S~ Mom to W ('04) & D ('05) & in April
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#11 of 18 Old 10-25-2010, 07:24 PM
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I was having absence and simple partial seizures before I went to a chiropractor and started getting adjusted. They started going away after my first adjustment. I really recommend seeing a chiropractor for seizures, but make sure you find a chiropractor who treats subluxations and doesn't just do spinal decompression. is a great place to search for a traditional pediatric chiropractor. Best of luck.

Mom to Lovebug 2/10 and wife to DH.
Thrilled to debut our beautiful 2011 breastfeeding calendar!
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#12 of 18 Old 10-25-2010, 10:49 PM
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my dd1 was 3years and 17 days old when she had a seizure very similar to what you described your son having. it took us 30 minutes to believe that she was having a seizure. it was the most frightening thing. it was like being in the Twin Peaks nightmare sequences.
by the time she got to the ER, she had fallen asleep. we were transfered to the local children's hospital. she had an EKG and an EEG, which proved to be slightly abnormal. she then underwent an MRI- but she had a perfectly healthy brain. so, they chalked it up to weird childhood stuff. couldn't explain it, but also didn't want to put her on drugs yet.
she had her second when she was 4 and a month. again, it was totally terrifying. this time we got her to the ER within 15 minutes and they gave her ativan and stopped the seizure. AGAIN we went down to the children's hospital. they put her on trileptal and told us we would just hav to wait and see. a month later, she had another. they had also given us an emergency medication called diastat to be given rectally. i gave it to her, but went to the ER anyway to have her checked out. her seizures were coming about a month apart and the ONLY one that ever stopped on its own was the first one. they continued to up her doses but it obviously wasn't doing anything. after about 5 months of this, i started researching epilepsy and celiac and it turns out her seizures- which are complex partial seizures ( which is what i think your son had) are the typical seizures for celiacs with seizures.

we are now 4 months seizure free. this is the longest we have been since january of this year.

but i worry so much about her future. the name for the seizures that last more than 5 minutes are status epilipticus. it is common for epileptics to have one in their lifetime, often it is the first one. for my daughter, all of her seizures are this. it is a very dangerous state.
it is so scary. i can imagine so many scenarios where she dies because she has a seizure and no one can help her. no one knows what is happening. i am sorry. you probably don't need me fueling your fears. but i know how absolutely terrifying it is.

has he had an eeg? they may want a sleeping eeg and an awake eeg. dd has only had awake eegs. if the eeg is normal they may jsut send you home to wait and see. if it is abnormal they will probably want an MRI and they will have to sedate him for that. that is also scary. but, if he has a normal eeg and a normal MRI, than he has around a 65% chance of never having a seizure again. are you sure he is having seizures in his sleep, and not just normal muscle jerks as he is falling into a deeper sleep? there is a benign childhood epilepsy that involves seizures in their sleep.

there is really fantastic treatment nowadays, and it sounds like you have a good ped. there is a really high chance that even if your son needs medication that he will live a completely neurotypical life. and a very high chance that he won't need meds.

it is so scary how unpredictable it is, and to see your baby having a seizure is just terrible.
if it makes you feel safer, ask the nuerologists to prescribe diastat if they give him medication.

i am so sorry you are dealing with this. the worst part is that there is nothing that anyone can really tell you. will it happen again? well, chances are that it won't, but really it is jsut a waiting game. will this med help? we jsut have to wait and see.

i am so sorry and i hope you get some guidance from the neurologists when you see them.
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#13 of 18 Old 10-26-2010, 04:31 AM
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I am so sorry you're going through this, Mama! My DH has seizures here and there at night when he's sleeping, too. It is VERY scary when he has a seizure. I know what you mean when you said it feels like a time bomb. My DH was medicated years ago but with the help of our doctor weaned off meds. He recently had three seizures in three weeks but before that had been seizure free for 7 years. My DH is a very large and tall man. It is absolutely frightening to see that body seize. The whole house practically moves. I have urged him to go back on meds but he won't. I can't even imagine what it would be like to see one of my children have a seizure. So scary.

Keep us posted! Best wishes to you and your family!

There are three things I learned about life. It goes on. -Longfellow


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#14 of 18 Old 11-04-2010, 11:34 PM
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My daughter had her first seizure in April of this year. I woke to her next to me eyes open, staring and her leg moving back and forth. she was unresponsive and i had no idea what was happening. I called 911 and by the time the ambulance arrived she was out of the seizure, but still very out of it. She had an abnormal eeg - but the neuro we saw suggested a wait and see approach and not start meds unless she had another within 6 months. Well, October came and no seizures, so I was relieved! Until the 17th! Woke to her staring, blank expression, she came out and went back in a few times over 20 minutes. We had the diastat, but didnt use it because we weren't sure if we should. Afterward it took her a few hours to wake up fully and act normal. This whole thing is just so scary! She has an MRI next week, and I'm really nervous about it! I'm just hoping the MRI comes back normal, and we don't have any more seizures. or if she does have more, it's at least 6 months out! I feel your pain though.. I'm always waking up and looking at her to see if she's okay.. such stress these wonderful children put on us!

Shannon Shaun - DH (and boyfriend since I was 16). my sweet Gwen 1/1/06 missing Dresden born sleeping 39 weeks 9/9/08 :, Delaney is scheduled to arrive 8/31/09 Odin&Loki :
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#15 of 18 Old 11-05-2010, 09:35 AM
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So sorry, mama! A friend of mine's daughter had her first seizure last week & it was suggested that she may have "benign rolandic seizures." I haven't read up on this but my friend said it sounded very mild & that children usually outgrow it in their early teens. The only reason I'm mentioning this is because apparently these seizures happen in the night (like with your son) so many parents never even know about it.

Very hard to see our little ones like this. ((hugs))

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#16 of 18 Old 07-27-2012, 08:45 AM
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OMG.. I feel like I wrote this thread because this is what we just experienced a few days ago. We're going to the doctors in a few hours because until now I thought it was night terrors. I played the scene on my head over and over and like your don he kept complaining he was thirsty. A few times he's said his head hurts. This is what prompted me to look into it medically. Those symptoms didn't match night terrors. I'm beyond scared and wish to speak to another mother who's gone through this. He's also 4 years old. What happened in your situation?
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#17 of 18 Old 08-06-2012, 05:40 AM
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I don't know exactly what to tell you, but I am really sorry to hear about your story. I hope you can overcome it and live a complete life.



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#18 of 18 Old 09-10-2012, 09:08 AM
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Could you please tell me what the outcome was on your son? My 6 year old has had 2 episodes in 6 months. The first one I woke to find her laying on her on her pillow. She was un responsive, staring, had vomited and not sure if she was breathing. She was pale and limp. We call 911. The hospital said it looks like she aspirated. The past Sunday, my daughter layed beside my while I was watching TV, she fell asleep. Approx. 15 minutes later, I seen her fumbling with her doll and her eyes were open. I said to her, I thought u were asleep? She said, I can't fix it.. I thought she was still half asleep. She wasnt really looking at me, kinda in a daze. So I told her to lay down and that she was dreaming. She turn to look the other way and look towards the door that goes outside our bedroom and said, who are those people? Make them go away. And then started staring at the ceiling and layed her head on her pillow still fixed on the ceiling and then became unresponsive. Her eyes was open, no blinking and become stiff somewhat. My husband grabbed her up and I called  911. This lasted for approx. 10 minutes at which she then vomited. She had then closed her eyes but still would not respond to us.  They did a CT scan and blood work which were normal. She slept for 13 hours after because she was so wore out from the whole ordeal. We did an EEG Friday and waiting for results. They are saying possible seizures or sleep disorder. I can not sleep because I do not want this to happen while I am asleep. I am having anxiety worrying about what is wrong.

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