Worried about my toddler’s repeated night-time episodes while asleep

[Albehani]

My child is 22 months old and has been experiencing repeated episodes that only happen at night while he is asleep.
During each episode:

• He suddenly becomes stiff.
• He starts crying loudly.
• He appears unable to control his body or movements.
• His mouth pulls/moves towards the right side.
• The episode lasts approximately 3–4 minutes.
• Afterwards, he becomes floppy/limp.
• He immediately becomes extremely tired and sleepy.
• He goes straight back to sleep following the episode.

The episodes follow the same pattern each time and currently happen approximately 2–3 times a month. We have an EEG booked in two weeks, but we are very worried about these episodes

I’m not qualified to diagnose but it does seem as though your toddler might be having seizures. My DD had similar symptoms but wasn’t diagnosed until she was 8.

@merrymelody Thank you so much, that’s what we think he is having…was your child only having them at night ? If you don’t mind me asking and what type of seizure ?

This sounds worrisome but once a scan is performed, then it would be easier to come to a conclusion and get the treatment for the child.

@TheNewFinch Yes, hopefully. Thank you very much

Are they going to do an overnight EEG? If he doesn’t have a seizure when the EEG is performed (in my experience) they won’t see anything. Have they asked you to try and film one of the episodes, it may be useful for them to see.

My Dc had an EEG where they gave him melatonin so he would nod off but they didn’t pick anything up. My Dc was eventually diagnosed with Focal Cortical Displasia as the cause of the seizures. This took many years.

Agree to filming them in case he doesn’t have one during the test. Definitely sounds like seizures.

Does he appear awake? Could it be night terrors?

EEG may not show anything if an episode isn't happening at the time.

It does sound like a seizure. My DC's night time tonic clinic seizures sound just like that, only with all-over body jerking after going stiff & mouth/head moving to the right.

I'd see if you can get vitamin D levels checked as there's lots of evidence that that being low increases likelihood of seizures. I'd recommend the Nutrient Teams Protocol for a guide to supplementing if her blood levels are under 200nm/L. We saw a noticeable reduction in seizures after improving vit D levels.

Agree with suggestion about videoing it. Our consultant asked for a video so they could confirm what was going on.

Both my dd's have tonic seizures which present exactly like this. You haven't mentioned whether a doctor has already asked you to record these episodes but if not then as others have said, I would recommend that you do so, so that the doctors have more evidence and can see what is going on especially as an EEG may not show anything if there is no seizure activity at the time. I don't know whether you can push for a quicker EEG?

Sending you lots of love

Night terrors ? But strange it would be every single time

@BigMartin Hey, they’ve told us to give him melatonin to help him sleep for the EEG, and his appointment is in the afternoon at 2pm. We also have several videos of the episodes. His behaviour of symptoms are always the same each time it happens. Its such very sad to see him going through that and getting diagnosed taking a long time (his been having these episodes since he was 8 months old)

@LeavingAtLast We initially thought it could be night terrors because it only happens when he’s asleep. But the stiffness, his mouth pulling to the right side, then becoming floppy and extremely tired afterwards makes us think it could be something different. It also follows the same pattern every single time.

@LoveThemToVits Hey, we will definitely look into vitamin D, thank you for the advice. That’s also what we’re worried about… if the EEG doesn’t show anything, we’re worried they’ll make us wait even longer for answers. It’s honestly so sad seeing him go through it because every time he has an episode, he seems like he’s really struggling. We just want to find out what’s causing it and get him the right help.

Yes, we took a few videos of him and make sure record every time he is having an episode.

@bgi Thank you so much. Yes, they did ask us to bring a few videos, but the main thing they’re focusing on is the EEG.

Sadly not, we just have to wait for 2 weeks.
Can I ask how long it took for your children to get diagnosed after the episodes first started?

DD only had (has) them at night. They did an MRI to diagnose her because they suspected a brain tumour… this was after her first tonic clonic seizure when she was 8. Prior to that, the paediatrician called her “spells” night terrors because she’d wake up crying hysterically during the night. This was years ago, before camera baby monitors.

I’m sorry, OP - I know how scary it is, especially waiting for a diagnosis and not knowing what it is. If your toddler does have epilepsy, there are many anti-seizure meds available and new treatments too.

Both mine were diagnosed fairly quickly. Eldest had seizures at 8 weeks old, we took her to a&e after the first seizure and then whilst there she went into status epilepticus so was rushed for an MRI/EEG. Diagnosed with epilepsy after those tests. It took years to get the cause of the epilepsy confirmed. As we knew eldests cause was genetic, as soon as DD2 had a seizure at 16weeks old, EEG was done straight away.

Eldest dd's seizures were always at night during sleep.

Can u video it, so u have some evidence to show GP? My friend was asked to do this when her daughter had episodes . Just read rest of thread. Hope you get help and things stabilise.

@merrymelody Thank you so much for all the help.. Hopefully we’ll know soon what’s wrong with him and be able to get him the right treatment

@bgi Thank you so much for the information, it’s been really helpful.

@BCBird Yes, we managed to take a few videos of his episodes, so hopefully they’ll help the neurologist understand what’s going on with him and get us some answers. Thank you so much ☺️

You are welcome. Happy to help if there's any other questions you have. Fingers crossed that you get answers soon.