Three year old unresponsive-super scary!

[ParisJeTadore]

I had a really scary thing happen a few days ago and could really use some support and advice because I am currently drowning in worry.

I was walking home from dropping off my son at the bus stop when I turned around and saw my three year old stop dead in his tracks and start to cry out of no where on the sidewalk. He wouldn't tell me what was wrong but wanted me to pick him up so I carried him back to our house. I got him inside, put him down on our steps inside and his eyes closed like he had fallen asleep. This is NOT normal behavior for my son so I grabbed him, shook him lightly and called his name but he couldn't open his eyes and whispered something before closing his eyes again. So I ran to the living room, placed him on his side on the sofa and yelled in his ear to open his eyes and talk to me. He was totally unresponsive and this went on for over a minute so I had to call 911 and really started freaking out. Paramedics arrived after what seemed like a life time and took his vitals which were normal. He still wasn't opening his eyes or speaking but I told him to grab by arm and he did so I know he could hear me. I should mention at no point did he stop breathing or change colour. He was pale when he came to. Finally as they were going to load him into the ambulance he opened his eyes and became alert. Out of precaution he was transferred to hospital but blood work came back normal and we were sent home. They have no explanation for what happened and neither does his pediatrician when we did a follow up.

I have been SO on edge since this incident and am having a really hard time getting over what happened while being terrified of it happening again. It really bothers me that other than blood work he hasn't been sent for any testing and they don't plan on investigating further. Should I be pushing for more tests?? My son and I are so close and the horrible, frightening thoughts plaguing me regarding what could have happened or what could happen leave me a crying, frightened mess.

I just need some advice. Has anyone experienced something similar with their child and what would you do if you were me?

 

[sevenofnine]

That would terrify me as well. It almost sounds like some kind of seizure. Did the doctors mention anything like that? It’s so weird that it happened so suddenly though. (But seizures usually are quite sudden.) How scary. I’m sorry you’re going through this.

 

[ttc126]

I’m so sorry. I have no great advice but my heart really goes out to you.

 

[_Meep_]

My first thought would be some sort of seizure activity - which I am sure is one of the scary things you are imagining? If it was this - and nobody but an expert can tell you that for sure - my guess would be that he had a simple partial seizure of perhaps a sensory or autonomic type, simply because he didn't lose consciousness at any point. I am no expert, but had a seizure scare recently with my littlest, and learned a lot during this time. Thankfully, she turned out to be fine and is NOT having seizures. Chances are your boy is not either, but it is important to be aware.

Seizure activity and type is different from person to person and nobody but an expert could possibly give any sort of diagnosis, but here are some features of certain simple partial seizures from some information I was given - you can see if any apply to what happened with him:

- No loss of consciousness
- Will be aware of what is happening to them, but may not be able to move or talk while the seizure is happening
- May be able to talk throughout and may remember what happened afterwards
- May experience a feeling of intense fear or uncontrolled laughter/crying
- May go red, go pale or sweat.

If any of this seems to apply, the first thing you need to do is ask to be referred to a paediatrician with specific experience of seizure activity in children. Then you need to explain exactly what happened in detail. I don't know what they would do next, or whether an EEG would show anything unless he actually had a seizure during the process.

In the meantime, if it happens again, it's really important that you catch it on camera if you can - the last thing you'll want to do, I know, but it's invaluable information for whichever professional he may end up seeing if you decide to take it further. I had to do this for my daughter, and just by watching my videos, the paed I saw was able to tell me she was confident it wasn't seizure activity, albeit strange behaviour. She has since stopped the behaviours.

Anyway, I hope it wasn't a seizure - I know how terrifying it feels - but if it IS, prompt treatment is key. There are many options out there, and many people who have forms of epilepsy live perfectly ordinary lives.

 

[ParisJeTadore]

That would terrify me as well. It almost sounds like some kind of seizure. Did the doctors mention anything like that? It’s so weird that it happened so suddenly though. (But seizures usually are quite sudden.) How scary. I’m sorry you’re going through this.

He asked if he was shaking at all but I said no and he got off the topic so I'm assuming he wasn't thinking seizures. It just went on for so long that I know something happened in his body even if I'm not sure what it is ☹️

My first thought would be some sort of seizure activity - which I am sure is one of the scary things you are imagining? If it was this - and nobody but an expert can tell you that for sure - my guess would be that he had a simple partial seizure of perhaps a sensory or autonomic type, simply because he didn't lose consciousness at any point. I am no expert, but had a seizure scare recently with my littlest, and learned a lot during this time. Thankfully, she turned out to be fine and is NOT having seizures. Chances are your boy is not either, but it is important to be aware.

Seizure activity and type is different from person to person and nobody but an expert could possibly give any sort of diagnosis, but here are some features of certain simple partial seizures from some information I was given - you can see if any apply to what happened with him:

- No loss of consciousness
- Will be aware of what is happening to them, but may not be able to move or talk while the seizure is happening
- May be able to talk throughout and may remember what happened afterwards
- May experience a feeling of intense fear or uncontrolled laughter/crying
- May go red, go pale or sweat.

If any of this seems to apply, the first thing you need to do is ask to be referred to a paediatrician with specific experience of seizure activity in children. Then you need to explain exactly what happened in detail. I don't know what they would do next, or whether an EEG would show anything unless he actually had a seizure during the process.

In the meantime, if it happens again, it's really important that you catch it on camera if you can - the last thing you'll want to do, I know, but it's invaluable information for whichever professional he may end up seeing if you decide to take it further. I had to do this for my daughter, and just by watching my videos, the paed I saw was able to tell me she was confident it wasn't seizure activity, albeit strange behaviour. She has since stopped the behaviours.

Anyway, I hope it wasn't a seizure - I know how terrifying it feels - but if it IS, prompt treatment is key. There are many options out there, and many people who have forms of epilepsy live perfectly ordinary lives.

Thank you for your reply. Is it possible to have a seizure without shaking? He definitely wasn't able to open his eyes or respond. And heaven forbid it happens again I will film it if able. Do you think it would be fair to have some non invasive testing? Perhaps a referral to a children's neurologist and an ekg to make sure his hearts ok?

 

[_Meep_]

Yes, absolutely possible. People always think of the classic fall-to-the-floor tonic clonic seizure, but there are so many different types. Some seizures are so subtle they last just a split second and can present as just a flicker of the eyelids or a slight turn of the head. These infantile spasms in children are incredibly dangerous for development, and what I was worried my daughter was having, but please don't worry about that as they are really hard to detect, not obvious like whatever your son had. They also typically start when the child is still a baby.

Usually the first thing they would do if they suspected seizure activity is an EEG, which is where they attach various electrodes to the head to get an idea of what's going on in the brain, if anything. It's completely non-invasive.

I guess what you do depends on how worried you are and what you feel in your heart is the right thing. Chatting to a neurologist for starters might be a good idea if you find you're still worrying about it in a couple of weeks?

 

[sevenofnine]

My nephew has seizures often (still somewhat undiagnosed, but so far not pointing to anything life threatening), and he has never shook. They’re absent seizures.

Xx

 

[sequeena]

My goodness how scary

A few years back my son was having absence seizures. He never shook but would often stop and stare blankly, possibly with an eye twitch or maybe his arm moving oddly but it would pass in under a minute and he would go back to whatever he was doing. It was like I put him on pause. Eventually he just grew out of it.

I think it's worth investigating. Absences are quite hard to pick up on an EEG I think. They use lights to try and trigger a seizure but I don't think that's how absence seizures work. Mind you it's been a few years since he had an EEG!

 

[Bevziibubble]

That must have been so scary! Sounds like an absence seizure possibly. I hope that it doesn't happen again

 

[SarahBear]

It sounds like a seizure. I would get in to see a neurologist. They can't do much to "test" what happened, but can use your description to make a judgement about whether or not they believe it was a seizure. I would also request a prescription for emergency medication. Seizure rescue meds are given if a seizure lasts more than 5 minutes. This allows you to stop a seizure in an emergency situation. From there I would keep a super close eye on things for a while. It could be a one time thing, or there could be more. If it's a one-time thing, you go back to life as normal. If it happens more, push for a CT scan and an EEG. Also keep a log with the time of day, any possible triggers, length of episode and description of episode. Hopefully it will be a log with one entry, but write out the details so you have a decent picture of things if it happens more. I have a child with epilepsy and went through hell with it last spring.

 

[_Meep_]

I hoped you would see this sarahbear, after what happened with Violet. I hope she is doing better now.

 

[Babybump87]

I can relate to this

A few weeks back DD2 woke from her nap as usual eyes open didn't notice anything took her to brush her hair and noticed she closed her eyes . Didn't think anything of it assumed she just closed them because of her hair getting brushed . Anyway I finished brushing her hair and took her down noticed she had her eyes closed still and was crying. Sat her down on the stairs and was talking to her telling her to open her eyes and she was just crying hysterically . I stood her up and walked away a bit thinking she would open them but she just put her hands out feeling around and started walking but just fell to the ground . I obviously panaciked and was about to call for help when I shook her again and she open her eyes .

It's thankfully not happened again and she has been fine since. Nothing alarming. I'm not sure what happened with my DD .

I'm glad your little one is ok and the hospital were happy with all his blood work. It's a very scary thing to happen . I am still worried it might happen again! Hopefully it's a one off incident for us both. Hope your little one is doing well xx

 

[SarahBear]

I hoped you would see this sarahbear, after what happened with Violet. I hope she is doing better now.

No seizures since a week after she was hospitalized in April. We're at the 6 month mark! She's generally doing quite well except for some emotional stuff. She's been through a lot this year and who knows what the seizures or meds have done to her emotional-regulation skills.

 

[ParisJeTadore]

Oh wow, thanks for all the advice you guys! I am glad that we are on the same wavelength. I went back to his doctors yesterday and demanded that he send him for some tests. We are being sent for an ecg and an eeg. The more I think about what happened the more I think it's very possible he had a partial seizure. It was just so abnormal for my little boy.

Sarahbear, I'm sorry that you have been dealing with scary stuff. That sounds very stressful! I have been keeping a very close eye on my son. I'm so paranoid now! I check on him constantly. Does anything trigger your daughters seizures?

Babybump87, our situations sound very similar. It's frightening when you see super abnormal behaviour in your child but have no idea what's going on. I really hope neither one of our kids experiences it again.

 

[SarahBear]

Initially they were with fevers. As things progressed, I don't think there was too much of a pattern. Possibly in morning and evening... When she was released from the hospital at a therapeutic dose of her current medication, she was having seizures within a couple hours of waking up. She hasn't had any seizures since April though.

 

[_Meep_]

Ah that's great. I'm so glad she's been seizure-free since April. Poor thing really has dealt with a lot at her age but you seem a resilient family and I hope things continue as they are and she can work through the emotional stuff. It's a big thing for anyone, let alone a little girl, so it's understandable she may be having some issues.

Paris, I think you have totally done the right thing. It's really important you find out what happened. Hopefully the tests will give some answers and/or peace of mind.

 

[ParisJeTadore]

Sarahbear, it's a relief that she hasn't any since April! Must still be stressful though.

Meep, thank you for the reassurance. He went for an ecg yesterday and I'm confident that it will come back normal. Unfortunately the eeg wait time is insane. He's on a six month wait list!! I will call and try to plead my case.

 

[_Meep_]

Oh god, what a pain! Here, I was told if there was any indication whatsoever that my daughter was having infantile spasms, she'd be fast-tracked straight away for EEG analysis. But as I said before, they're very dangerous. I'm SO glad it wasn't that. We also paid to see a private paediatrician as GPs are both slow and useless. However, it's obviously different in America.

 

[ParisJeTadore]

I was told I might be able to plead my case given the situation. I will know in a couple weeks if that's possible. I live in Canada and while I'm grateful for free healthcare it sure has its draw backs!

 

[SarahBear]

Yeah... I've heard about the drawbacks of the Canadian healthcare system. I hope you can get answers soon! And like I said before, keep track of EVERYTHING, especially if it happens again. Even if it was a seizure, that doesn't necessarily mean that it's a big problem. It could be a one off sort of thing or it could be a minor form of epilepsy that doesn't have a drastic impact. But if things get complicated, you'll appreciate your notes.