Toddler biting his tongue in his sleep - AIBU to be concerned?

[SinkGirl]

Posted a few weeks ago about my DS (2) waking up covered in blood and then discovering a large ulcerated wound on his tongue. Mentioned that earlier in the year he had some smaller incidents of bleeding from his mouth and we thought they were teething related (he doesn’t stick his tongue out much, never has, and I’d never spotted any injuries).

It’s just healed up. Night before last there was a small amount of blood in a drool stain on his sheet. Last night I woke up to him shouting (not crying) to find blood everywhere again. Gave him some painkillers and sat with him until he settled down. This morning I can see a wound / bruising on the other side of his tongue.

Last time I posted people said I should be concerned because it could be nocturnal seizures. We rushed him to an emergency appointment as the wound looked really nasty and the GP clearly thought I was overreacting and said it would heal on its own and to come back if it didn’t. I asked if it was normal for toddlers to bite their tongue so badly and he sort of shrugged and said they can do.

I’m just thinking this can’t be right can it? He’s never done it during the day so if it was down to a big tongue (which I don’t think he has) or teething wouldn’t it also happen while he was awake? And it’s not a little graze, it’s a big wound on the top and underneath just like before.

Last time he suffered for over a week and was clearly in a lot of pain, drooling a lot.

Should I take him back to the GP? Can’t tell if I’m overreacting or not. This was his sheet this morning.

I would go back to gp. None of my children bit their tongue in their sleep, neither do I. I would ask for a referral and possibly sleep in the same room to keep an eye.

Thank you - no, it’s never happened to me either, or his twin. I also think I would cry if I bit my tongue that hard (I’ve done it once or twice while eating in the past and it really hurts!).

I’ll make an appointment. Going to get a video monitor that records movement to see if I can spot anything (unfortunately there’s no space in their room and he won’t sleep in our bed!)

Ok I've bit my tongue in my sleep, I do it once every few months and it HURTS, so I immediately stop and wake... there's no blood. What's concerning is it's such a big note and so much blood!! I'd be going back to the gp

Bite

I agree - it seems very severe to me, when just a small bite to your tongue really hurts but doesn’t bleed much.

Just managed to get a better look at it, and it is really quite bad. This was the last one when it ulcerated although you can’t see the full extent of it as it went further back and was underneath too.

This time it’s on the other side and a bit further forward but surrounded by bruising. I can’t imagine doing that to myself without a lot of tears and swear words.

Oops, kicked by a toddler while typing!

Will call the GPs again in the morning and get him seen - I’m sure it will heal fine but want to see if we can find out why or prevent it (I foresee another long week of no sleep).

I have a child with autism and comorbid diseases. He has neurological issues which have meant he has small convulsions in his sleep and during the day. He has bitten his cheek and tongue before while having one of these convulsions.

You need to get him back to the GP and referred to a paediatrician and neurologist. I'd also have him checked by an ENT to rule our adenoid issues causing his mouth to get dry and him chomp.

OP I grind my teeth in my sleep, and when it gets really bad I often wake up in pain having bitten my tongue. Could it be something like this?

I’d definitely get back to the GP, and would maybe try to set up my phone to record him for a couple of hours overnight to see if I notice anything.

I would definitely take him to get checked again and see if the GP would make a referral to a neurologist, to be on the safe side. A nanny cam sounds like a very good idea.

It may just be bad or excitable dreams, but of course you want it to be checked out properly. Has it been a particular time when he wakes you after doing it? Im clearly not diagnosing anything but I have nocturnal seizures, also called waking seizures as they occur when I'm coming out of deep sleep, usually after dawn. I bite the sides of my tongue and sometimes cheek. You can see the deep teeth marks and they bloody hurt! Are there any signs of incontinence, I suppose if he is nappies you couldn't tell though?

Is he in a child's bed? It might be worth having bed guards if you don't already, or if it's a low bed, padding on the floor.

I hope there is nothing to worry about and that he is just an excitable sleeper or similar!

I occasionally bite my tongue in my sleep and will jolt myself awake doing it but the amount of blood there is the kind I’d expect if I’d bitten my tongue during a seizure- I have epilepsy but don’t have nocturnal episodes.

Thanks all.

supermum his twin brother has all those issues (well, we are waiting on some genetic tests before they diagnose ASD or something else, but he has other issues). This one, who bit his tongue, isn’t talking yet either and does have some traits that could be related to something like ASD.

Going to go back to the GP and ask for more help. Could definitely be something like teeth grinding, I’m just not sure it would be this bad as surely if you were just asleep you’d wake yourself because it hurts? I think either he’s bitten down very hard (from something like a seizure) or been grinding his teeth and his tongues got in the way but surely you’d wake up before doing so much damage to the Top and bottom of your tongue? I don’t know.

Going to get a video monitor and set it up so we can check it if it happens again.

I was going to say you need to video him at night

My daughter did exactly that three or four times when she was still little and had a dummy. I think she had lost her dummy in her sleep, and chewed on her tongue instead

It was so horrible to look at that it made my legs go a bit funny. It never happened again after we'd ditched her dummies.

Also, if the Gp fobs you off, ask them how they are ruling out nighttime convulsions? They can't. Only a neurologist or paediatrician with a specialty in neurology can tell you.

Not to scare you but I've been told by doctors here in the US the incidence of neurological issues is higher in under 5s who are multiples, premies and those born after 42 weeks. DS was born after 42 weeks which is why it came up. I had no idea. Def get it checked out by the right specialists who can properly assess your child and tell you if there is a problem or not. A GP doesn't have the knowledge or testing equipment to do the necessary work for a safe diagnosis.

Thanks everyone. Really appreciate it.

The twins are both still in cots. No dummies. Both times it’s happened early hours of the morning (2-3AM). Last time his sleeping bag was covered in blood so I guess he sat up shortly after it happened - this time most of the blood was on his sheet so I’m guessing he stayed lying down for a while after it happened.

Thank you :) His twin brother was recently diagnosed with a specific type of brain damage from an MRI and even he hasn’t seen a neurologist, but I think in this case it’s a good idea to be safe, especially as they both seem to have related things going on.

Good luck. Try not to stress. Harder than it sounds I know.

Hi @SinkGirl could I ask what the outcome of this was please? My 18 month old is exactly the same. Been doing it since July 2018 and no health care professional can give us answers, just say it's a habit. But his tongue often looks like your sons, he's sheets are like a blood bath & he drools to the extreme that his bib is literally soaked within 30 mins!! Thanks x

Hi @Sez655 - is your 18 month old still biting their tongue in sleep? My 2 year old starting biting his tongue during sleep 3 months ago. He bites it every night and every night, multiple times. We’ve had two video EEGs and an MRI. Neurologists have said they do not see any sign of seizure of epilepsy. Do you have any lead on why it’s happening?

@TiredMomNC he has stopped now (20 months) thankfully! No one had answers, but we noticed that he was doing it when there was another pain ie belly ache, when he had a cold & sore ears! Seems to be a pain coping mechanism in his sleep! Weird but it's the link we found x

Thanks for the response @Sez655
My son is still biting his tongue in his sleep and we can’t figure out why! Some nights are worse than others. @SinkGirl did anything happen with your child?

I completely know how you are feeling I cried many times as I couldn't work out why he was doing it and I couldn't help him. I was also frustrated with the health professionals as no one wanted to know or help! As well as being absolutely shattered due to him waking up multiple times screaming. I had even tried him sleeping on me a few times and he did it still, therefore I knew that he wasn't having a fit or seizure. I'm sorry that I don't have any answers for you, just hope that your son stops like my son did. However, for all we know he may start again when he gets any other pain 🙁

Thank you @Sez655! You are exactly right - it’s so hard! The healthcare system has basically told us to wait it out 😭 your story gives me hope!

Dies he have a good bite? Been to the dentist yet?