Help - Night Terror? Nightmare? Seizure? Anomoly???

[Okiemomma]

Quick back story before I explain our current situation.  My son was born 9 weeks early due to preeclampsia and stayed in the NICU for 28 days.  He had really bad acid reflux, so we have struggled with sleep for a long time.  He's had good weeks/months and really bad weeks/months.  We have tried everything under the sun to get him to sleep - we have consistent routines, good wind-down, schedules, etc. Pretty much anything we try "fixes" the issue for a few weeks and then he's back to night waking (the last fix was to cut out milk after lunch - worked like a charm for 2 weeks and now the last 2 nights, he has been having his waking fit again).  Sometimes once/night, sometimes every hour.  Pediatrician told me when he was a baby and also around age 2 that he's just going through an attachment issue and needs to just cry a little.  Pediatrician has ruled out (though I haven't ruled out anything) sleep apnea, asthma, enlarged tonsils, dairy allergy, or anything else that she can think of that would cause sleep issues.

Fast forward to now.  He'll be 3 in a few weeks.  He still doesn't STTN which honestly wouldn't be a huge deal to me if I just had to get up and tend to him once/night or whatever the case may be.  But when he wakes, he seems to be in pain.  He screams and cries out for me.  He is usually laying on his stomach when this happens and often at the height of his fit, he's straight as a board and stretching his legs out.  Often before or after this body stiffening, he's hitting in a panic for me to help.  He also ends up passing gas in the middle to end of his fit, but I know that the act of crying can cause gas so it could be a related issue or just caused by the issue itself.  I am VERY aware that this sounds like a night terror.  BUT... he knows I'm there - I don't get the blank stares like I've heard of with terrors.  He answers questions - I ask him all sorts of things like, "Does your belly hurt?  Do you need to go potty?  Do your teeth hurt?" and he answers me.  He's definitely aware of my presence and is in a panic for me to help him.  Last night I tried something new - I got a toy that plays music and it seemed to slowly calm him down.  When he was settled, I asked what made him feel better.  He said, "Mommy made me feel better."  So... can kids with night terrors be somewhat aware of their surroundings?  Or could this be a seizure or some other neurological issue?  Or rheumtoid arthritis and the stiff legs hurt him?  Or just a full bladder (I have taken him to the bathroom during these episodes before, and he treats me as if I'm torturing him)?  When he is done crying, he often times just stops crying and rolls over to go to sleep like nothing was wrong.  This can last for 1 minute or 15 mins.  Sometimes this fit is a few hours after he's gone to sleep (which is when a night terror often occurs) but they also happen at 1am, 2am, or 3am.  Rarely early in the morning (4-6am).

I guess I just want some weigh-in on whether this sounds like a night terror or not.  I used to have night terrors, and I know it can be hereditary.  And as I type this, I feel silly because it sure sounds like a night terror when I describe it.  But I just don't feel like he's ever given me that blank stare or completely irrational behavior like I know comes with night terrors.  Again, he seems fully aware and desperate for me to help him.  Like I mentioned above, this happens nightly, sometimes multiple times in one night, and then every once in awhile we get a week or even month reprieve of any sleep issues.

FYI, he goes to bed easily and wakes happily, usually (he does wake crying occasionally).  Because I know someone will ask: he goes to daycare, naps 12:45-3:00, bedtime 8:00 asleep by 8:30 usually, he is an early-waker (always has been) at 5:30am or sometimes earlier.

Thanks for reading!!

[MasynSpencerElliotte]

Can he move at all during the episode? I have suffered from various parasomnias, one of which is called sleep paralysis. It is s type of confusional arousal where your brain wakes up but your body doesn't right away (though tbh I cannot speak during them either) and it is quite frightening. If he is lucid and answering questions it really doesn't sound like a night terror. Have you ever video taped an episode and shown the Dr?

[We Three]

 My dd would go stiff as a board during some of her NTs.  She'd lock her legs it seemed. So terrifying. 

 When you take him to pee, does it stop afterwards? That almost always stopped our episodes, and I did think it was a type of confusional arousal caused by the need to pee.   

 I don't think the blank stare is neccesarily something that happens with every child.  I never got a blank stare. DD didn't seem to recognize that I was Mama....in fact she used to beg us to find her Mama.       Such a trauma isn't it.....I'm sorry.

[Katet]

DD didn't seem to recognize that I was Mama....in fact she used to beg us to find her Mama.   

My DS1 was like that, he didn't have blank stares, but did keep saying I want my Mum. His had nothing to do with going to the toilet (not sure if we tried)  In the end it just stopped, but the interesting thing was after I worked out it was when DH was really stressed/busy at work & DH wasn't around as much & I think it was manifesting in his dreams/ night terrors .

Pediatrician told me when he was a baby and also around age 2 that he's just going through an attachment issue and needs to just cry a little. 

Did that mean you were encouraged just to basically leave him to cry so he learnt his crying didn't get responded to? Have you ever left him crying to see if he will settled down?  Because I'm wondering if it's a very real fear of him being left alone when he's upset. Because this makes it sound like he really just gets super
 & this

When he was settled, I asked what made him feel better.  He said, "Mommy made me feel better." 

This makes me wonder if he doesnt' just get so upset that he can't relax & that's why he goes so stiff.

[becj86]

I would video one of these happenings and show the doctor. Its really hard for me to understand what's happening from what you've written, so they could be finding it hard to work it out. The sequence is really important with neurological things. If it were a seizure though, he shouldn't be able to talk to you (maybe before but not while he's stiff). Videos of a couple of instances would really help the doctor if it is neurological and if its not, they can talk you through why they think its not.

TBH, it doesn't sound like NTs to me.

When he is done crying, he often times just stops crying and rolls over to go to sleep like nothing was wrong.

This is the only bit that sounds like a NT.

Does he understand what dreams are? L panicked when he first had dreams because he thought they were all real so I had to explain his brain was 'playing'/processing.

Have you tried not questioning him but just putting your hand on/stroking his back and saying quietly something like "Mummy's here" til he calms down a bit? It might be worth acting from the presumption that he is physically ok and seeing if reassurance helps. If you're panicking and someone else comes along and panics with you, it winds you up rather than helping you settle, yk?

[We Three]

 Yes, even tho the advice with dd's NTs was to leave her be, that wasn't something I could do. I continued to speak softly, saying "You're safe, Amelia. You're going to be ok."   It likely did nothing, but we don't really know, yk? I think being present was important, IMO.

[Lolly]

Is he still on reflux medication? If not does he have any symptoms of reflux at the moment? If he's waking and seeming to be in pain what about ruling in/out reflux as a basis or trigger for this?

Laura

[Okiemomma]

Thanks for the replies!  I'll try to answer all of the questions and then describe last night, which was horrible!

It seems that he can move during his episode.  During the few seconds that he's stiff as a board, it's hard to tell if he would be able to move or not because he's purposely (so it seems) stiffening up.  I wouldn't be surprised if a doctor told me that portion of it was a mild seizure where he couldn't speak or move, but if so, it would be a very mild and short (again, a few seconds) seizure.

It does not stop after he pees.  In fact, getting him out of bed and not holding him seems to upset him more.

He doesn't try to find his mommy once I'm there.  Last night I tested this within a few seconds of going into his room while he was crying.  I said, "Look at momma," and he immediately turned and made normal eye contact with me.  He was able to talk.  He even asked (in screaming tears) to go to the bathroom.  However, after he went, he still couldn't stop crying for another 20 or 30 mins.

He is not scared of me leaving or just letting him cry.  He's a perfect angel when going to sleep - no sleep associations needed to get to sleep.  In the middle of the night when he stops his crying fit, he settles down and really just wants me to leave so he can sleep.  I've tried to ask why he was crying or if something hurt, and he always just says stuff like, "nothing."  I kiss him and tell him I'm going back to my bed.  He says ok and I leave.  So I truly don't think it's a fear of me not being there, leaving him, attachment issues, etc.

He is not on reflux medicine anymore - hasn't been since he was about 11 months old.  His pediatrician says she can rule out any dietary issues (intolerances or allergies) and reflux issues because he has weeks and even a month at times where he sleeps perfectly all night every night, without diet changes.

I think I'm going to treat them as nightmares for the time being, but I still am not convinced.  We did have a chat this morning about how our mind "thinks" and "tells stories" while we are sleeping, and big brother (10) was able to "confirm" that his mind thinks at night too.  My LO didn't seem to be listening or too interested in what we were saying.  Hopefully he was peripherally listening!

Last night, he was asleep by 8:30pm.  Woke crying at 10pm, settled fairly easily (a few mins).  Same thing at 11:30pm.  1:45am he woke crying and wouldn't settle well at all.  This is when he asked to go to the bathroom.  I did have him roll over to his back and that seemed to keep the stiffening from happening (or could have been a coincidence).  He was fully awake and trying to talk with me.  Some things I understood ("I need to go potty," "I want bunny," "Where's my blanket," etc.) but much of it was through so much crying that I couldn't understand.  I cuddled him in bed, I tried to soothe him with music, I walked with him around the house, I rocked with him in the chair.  Nothing seemed to calm him down.  Finally after 30-45 mins of crying, I had put him back in bed, he asked for water (which we keep in his bed and I had tried to offer to him a few other times during this episode), then he cuddled into his blanket and was ready to go back to sleep.

My current thoughts (though everytime I have a hypothisis, that night's episode proves me wrong) are that he is having the full bladder feeling, causing stirring and light sleep, causing nightmares, and then waking without being able to calm down.  I do agree with the fact that I'm probably working him up more when I ask all about what's wrong, does something hurt, etc.  I don't do it in an anxious or panicky way, but maybe I'll try to just go in and pat his back and repeat the same few phrases over and over softly.  (Though as I say this, I'm reminded that when I try to sing soft songs to him, it just ticks him off more!)  Maybe I'll also try to cut off water (we've already stopped milk past 3pm) past dinner time to keep his bladder more empty and remove his water from his bed (it was put there by suggestion of the pediatrician who thinks he has no sleep issues).

Any other thoughts??  I'm so desperate for help!  I work full time and can hardly function on 4-6 hours of sleep nightly, compounded for 3 years!  I do get a few nights here and there that are good long 8 hour stretches, but they are never even close to enough for me to catch up.

[Okiemomma]

I almost forgot - two nights ago, we had a fairly decent night.  I decided to try and stir him at 9:30pm.  He stirred and stayed asleep, but within 3 minutes, he fully woke crying.  I went in and it was definitely a very mild episode.  I took him to the bathroom, he went, and he settled back down to sleep quickly.  He slept the rest of the night until 4am.  He must've fallen out of bed or something (rare occurance) and wasn't hurt at all but a little shook up and kind of whined.  I put him back in bed and he fell back to sleep quickly.  So that was a good night.  Maybe I should be taking him to go to the bathroom at 9:30 every night.  Seems weird though because I do have him go at 8:00 when we are getting dressed for bed.

[Lolly]

He is not on reflux medicine anymore - hasn't been since he was about 11 months old.  His pediatrician says she can rule out any dietary issues (intolerances or allergies) and reflux issues because he has weeks and even a month at times where he sleeps perfectly all night every night, without diet changes.

I'm not sure how that means it's not a reflux flare up - my 9 year old refluxer has bad days/ weeks without any dietary changes He came off meds at about 2.5yrs but has been back on them at fairly regular intervals since. Sleep disturbances are usually an indication things are not right - and obviously it helps he an now tell me what hurts and where.

I'm not saying it's definitely reflux in your case - could well be needing the toilet or just nightmares but I don't think you should dismiss the possibility either really.

Laura

[Okiemomma]

Thanks for the info and sharing your experience, Laura!  I just took my dr for her word and assumed her logic was correct.  Maybe reflux is something I need to reconsider.  Any suggestions on things I can try to eliminate or do to help or to determine if it is reflux?  Would you mind sharing what your son's night wakings look like when his reflux is bothering him (or what they looked like when he was closer to the toddler age, if you remember)?

[Lolly]

My son didn't really sleep properly until he was well over 2 - after all his teeth came in (teething makes reflux worse). He woke frequently, would be awake for hours and get distressed, but not in the way you describe really. When he did sleep I would see him gulping in his sleep and in the day he would have frequent hiccups, poor appetite etc.

The way to see if it is reflux is to trial meds again at a decent dose for weight for a couple of weeks and see if t makes a difference. You can try simple things too like elevating the head of his bed.

Laura

[Okiemomma]

Well, last night after him waking at 11pm and 12pm, I ended up sleeping on his floor with him.  He stirred often still, and I got fairly bad sleep, but he was able to be comforted by my presence rather than cry out in pain.  I don't want to create a sleep association, and I know co-sleeping with a 3 yr old is not ideal, but I'm glad I did because I noticed him grinding his teeth a little.  I've read today that this can be indicative of a handful of things such as sleep apnea, asthma, and also reflux.  Since he was premature and did have a very bad case of reflux when he was a baby, I'm going to pursue this route first.  I've just called the pediatrician to see if she is willing to call in a prescription today without seeing us.  Fingers crossed!

For those who have struggled with reflux in toddlers/older children, can you give me suggestions on bedtime snacks/fluid?  He is very used to having a bedtime snack, and last night it was really difficult to keep it from him (especially since last night was a church night and we didn't get home until bedtime).  What would be a good snack I could give him about 30 mins before bedtime?  And would water be okay?  I notice that when I'm having heartburn issues, water seems to make mine worse.  But he's going to cry for a drink with his snack.  Last night I just had to redirect a million times - it sure tested my patience!  Suggestions appreciated!

[jessmum46]

Sorry just a quick one to chip in, but I wonder if they could just be overtired wakings?

naps 12:45-3:00, bedtime 8:00 asleep by 8:30 usually, he is an early-waker (always has been) at 5:30am or sometimes earlier.

To me, this routine says the nap is far too long, and is robbing his night time sleep (which should be the most restorative), so he is overtired.  I would be cutting his nap shorter, with the aim of lengthening his night sleep.  9 hours or less is a very short night - I would be aiming at 10.5 as a minimum and if he's not getting that, the nap needs to go shorter still.

Hope that's some help and another thing to consider

[Okiemomma]

Thanks jessmum46 for the idea!  He's in a daycare that we love, but their nap time is non-negotiable so it is what it is.  If he were to wake early, they have a place he can quietly play while the other kids sleep, but they won't wake him early.  He does fight his naps quite a bit on the weekends, so I've almost given up on naps at home (and just plan to be in the car in the afternoon so he can catnap a little to get us through the evening), but those nights don't seem to be any different/better (though I wouldn't expect a change from just one day of missing his nap).