DC had something like a seizure/spasm but Dr. at the ER couldn't say what was wrong

[Anonymous]

Has anyone had their child experience something that seemed like a seizure during their sleep, but was something else. The other day my DC (20 months) started crying in the middle of night, which happens sometimes, but I noticed that this time he was making weird arm and hand movements. Actually, for a few minutes he seemed stuck in a sleeping mode and I don't think he was really aware I was there. There was also a lot of saliva that soaked his shirt, the bedsheet and padding under it, as if some water had been spilled. We called the pediatric hotline because it all seemed so unusual, and they advised us to go to the ER. I watched videos that were captured by the baby monitor and found that about 30 minutes before he cried, he had what seemed like a seizure or strong spasms. I saw that he suddenly woke up (or at least his eyes opened), his mouth open, his arm go up with his hands sort of clenching, and his legs were making a jerking movements. His whole body was sort of shaky. He also sounded like he was struggling to breathe. The video cuts off after about 1 minute, so I don’t know how long that really lasted. About 15 mins. later the monitor starts recording again, and he was breathing weird with his one arm folded and hand balled up in a first. His movements became less tense after a few minutes but still continued, and I came in about 15 min later because he started to cry. It all lasted about 30-40 mins.

We showed the videos to the Dr. on call but he’s not sure it’s a seizure and went to the neurologist for their opinion. They confirm that it's not a seizure but aren't able to provide an explanation of what happened. The Dr. literally said he doesn’t know what it was, just that isn’t not a seizure because it is missing some key symptoms. I guess that’s a good thing? I find it weird that our discharge papers don’t even mention what we were in for, just to make an appt. with their neurology department.

What is frustrating to me is that they initially said they were going to take a blood and a urine sample, but then changed their minds because it wasn’t a seizure. Why didn't they try to figure it out that time at the ER? It kind of felt like a waste of time because they didn't even say it was just a bad dream or say is was normal, just "I don't know". Could this just be nothing? Has anyone had their child experience something like this? I can't imagine this is just a case of a really weird nightmare.

[Anonymous]

Your description makes it sound like baby was very actively dreaming

[Anonymous]

DS had something like that when he was 3. He had a cold at the time with a minor fever, but nothing else going on.
His pediatrician, whom I love and trust 100%, basically said that kids are weird and sometimes something weird like that happens. As long as it didn't happen again she wasn't concerned.
He's now a happy and healthy 12 year old and nothing weird ever happened again.

[Anonymous]

PP again... to be clear, a ton of weird things have happened in the intervening 9 years, just not related to that! LOL!

[Anonymous]

Sounds like night terrors.

[Anonymous]

Anonymous wrote:Your description makes it sound like baby was very actively dreaming

OP here, can they dream with their eyes opened for a full minute? I'm really asking.

[Anonymous]

Anonymous wrote:Sounds like night terrors.

I looked up night terrors. It seems that those involve more way more aggressive movements and actual yelling. Also couldn't the Dr. just have told me that? It seems common enough that they could have told me at that moment.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Your description makes it sound like baby was very actively dreaming

OP here, can they dream with their eyes opened for a full minute? I'm really asking.

A kid having night terrors looks like they are awake, but they aren't. Eyes open, they might talk, they might walk.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Your description makes it sound like baby was very actively dreaming

OP here, can they dream with their eyes opened for a full minute? I'm really asking.

A kid having night terrors looks like they are awake, but they aren't. Eyes open, they might talk, they might walk.

Yes, both my kids have had them.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Your description makes it sound like baby was very actively dreaming

OP here, can they dream with their eyes opened for a full minute? I'm really asking.

Yup, absolutely. And it's super freaky but not uncommon.

[Anonymous]

Anonymous wrote:Sounds like night terrors.

+1
My older DD had frequent night terrors as a toddler, and they really freaked me out the first few times. I had no idea what they were like and thought she was wide awake while screaming and seemingly having uncontrollable spasms in my arms for up to 10-15 minutes at a time. Turns out it was just night terrors.

[Anonymous]

+1 to night terrors. They’re horrible! I made an appointment with our pediatrician when DS started having them just to ease my mind. They really only happen for DS when he’s sick. Has your DC been sick recently or overtired?

[Anonymous]

We have a kid who had a grand mal seizure as an infant and absence seizures throughout toddlerhood, and one who had lots of night terrors. Your description does sound like a night terror to me, but it is good that they want you to follow up with a neurologist, if only for peace of mind.

[Anonymous]

Anonymous wrote:Has anyone had their child experience something that seemed like a seizure during their sleep, but was something else. The other day my DC (20 months) started crying in the middle of night, which happens sometimes, but I noticed that this time he was making weird arm and hand movements. Actually, for a few minutes he seemed stuck in a sleeping mode and I don't think he was really aware I was there. There was also a lot of saliva that soaked his shirt, the bedsheet and padding under it, as if some water had been spilled. We called the pediatric hotline because it all seemed so unusual, and they advised us to go to the ER. I watched videos that were captured by the baby monitor and found that about 30 minutes before he cried, he had what seemed like a seizure or strong spasms. I saw that he suddenly woke up (or at least his eyes opened), his mouth open, his arm go up with his hands sort of clenching, and his legs were making a jerking movements. His whole body was sort of shaky. He also sounded like he was struggling to breathe. The video cuts off after about 1 minute, so I don’t know how long that really lasted. About 15 mins. later the monitor starts recording again, and he was breathing weird with his one arm folded and hand balled up in a first. His movements became less tense after a few minutes but still continued, and I came in about 15 min later because he started to cry. It all lasted about 30-40 mins.

We showed the videos to the Dr. on call but he’s not sure it’s a seizure and went to the neurologist for their opinion. They confirm that it's not a seizure but aren't able to provide an explanation of what happened. The Dr. literally said he doesn’t know what it was, just that isn’t not a seizure because it is missing some key symptoms. I guess that’s a good thing? I find it weird that our discharge papers don’t even mention what we were in for, just to make an appt. with their neurology department.

What is frustrating to me is that they initially said they were going to take a blood and a urine sample, but then changed their minds because it wasn’t a seizure. Why didn't they try to figure it out that time at the ER? It kind of felt like a waste of time because they didn't even say it was just a bad dream or say is was normal, just "I don't know". Could this just be nothing? Has anyone had their child experience something like this? I can't imagine this is just a case of a really weird nightmare.

I know it's frustrating, but the job of the ER is to make sure the child is stable and doesn't need intervention right at that moment. It's not really set up to sort out the final diagnosis, just to make sure the child is safe enough for the immediate future to go home with you.

That means a lot of the time, going to the ER is frustrating. You want answers. Sometimes you get them there, but a lot of times, you don't. Hopefully the outpatient workup will get you what you need.

[Anonymous]

My child has seizures in their sleep. I would go get checked by a neurologist. PSV, Children's and Children's Inova have amazing teams. I am VERY surprised that the neurologist on call did not have an EEG performed to rule out seizure. Not all seizures "look like they do on TV". Its important to have the EEG done within 24 hours of the seizure to make this determination.

For our daughter, It started as weird face twitches/face feeling numb. We didn't know that was an "aura" or warning that
seizure was about to come. Eventually the seizures did move into full body repetitive movements. Afterward she is not quite alert, and once she is, she's unable to speak clearly for about 10-20 minutes. What she has is called benign rolandic epilepsy and it is controlled with medicine. We use a sleep monitor that alerts us of seizures/weird movements/breathing at night.

I hope this isn't the case for you but just wanted to give you some insight.