Child with labyrinthitis - any ideas?

[marceline]

DS age 8 was sent home from school in December after suddenly feeling dizzy and nauseous. Initially I thought he had a tummy virus. But although e was never actually sick the dizziness and nausea have persisted so I took him to GP. At first I was told he had a middle ear infection, he had a course of antibiotics which he's just completed, but his symptoms have not really improved for about 4 weeks.
He frequently complains of loss of balance and feeling sick, blurred vision and not being able to concentrate. He was sent home again yesterday. I took him back to the doctors who thinks it may be labyrinthitis and referred him to the ENT clinic.
I just feel really sad for him as the frequent bouts of nausea and dizziness are really affecting his day to day life. The thing is sometimes he is completely fine and is able to play with friends for several hours. But it seems when it comes to going to school in morning his symptoms appear quite severe. I don't think he's faking any of it but i worry that he is really anxious about going back to school as he feels unable to concentrate and I think he works himself into a sort of panic which makes things worse.
Sorry about rambling - I'm really bad at this. Just wondered if anyone had any experience of this illness or any strategies that may work.

[3littlefrogs]

I would be wanting a scan of his head asap. Four weeks is a long time. He hasn't had a bang on the head that you don't know about? What actually happened the day he was sent home from school?

[3littlefrogs]

I have never heard of blurred vision with labrynthitis.

[marceline]

Oh dear, you're worrying me now! The first time he was sent home he was in class, he turned very pale and hot and cold, and complained of nausea. No bumps to the head that I'm aware of!

[3littlefrogs]

Sorry - I don't mean to worry you unnecessarily, but honestly, if my 8 year old had nausea, dizzyiness and blurred vision for 4 weeks I would be in A&E .

[3littlefrogs]

Did the doctor check his pupils and look into his eyes?

[NotMostPeople]

I've had labrythitis it took months to completely go and was very bad for about two months so it can take quite a while. I did have all the symptoms you suggest but I agree that if this were one of y dc's I'd want a second opinion just in case. Tbh there was nothing that helped, just time and motion sickness tablets prescribed by the Dr.

Give your dc a big hug, it's really quite tough to live through.

[NotMostPeople]

Btw my vision was blurred.

[marceline]

Well I generally try not to panic and like I said, he often seems to be ok for a while but then the symptoms come back. Our doctors clearly don't seem that worried. Today they finally referred him because I insisted that it's been too long and I want a specialist. Do you think I should request a scan or wait for ENT? I know NHS are sometimes not that proactive unless you pester them.

[roundabout1]

Hi Your poor ds. I have inner ear damage following a bad virus & the effects of this are really wide ranging depending on the circumstances. Stress can make it worse as can a busy visual environment so it could be that the busyness & concentration involved in school are making the symptoms worse. In my own home or familiar surroundings I feel much better. ENT would be the first port of call but in my experience aren't that great to do with inner ear things although hopefully your experience will be better. If it is labs keeping active is the main thing as the brain will compensate that way.

[Luckyluckyme]

I had labyrinthitis with blurred vision and it took months to go and also it was worse in the mornings.

I hope your DS feels better soon.

[Chaoscarriesonagain]

I have Ménière's disease, which is comparable in some ways.

ENT didn't help me. I looked to alternative things around me as triggers, such as change in pressure, sudden movement, travel imbalance.

Bring wary of these things has really helped. I would also ask a specialist to check the child out for vestibular issues; it's a form of migraine. Whilst you wouldn't normally associate headache/migraine with his symptoms I've found they can be inextricably linked. Which makes them easier to control with regular medications.

[Chaoscarriesonagain]

Ps MMA practitioners often get a their balance knocked 'back into place' by specialists when it's knocked by severe impact. It's not something I've had done, but I believe it's very effective for your child's prob

[marceline]

roundabout I have noticed he is often ok whilst he is playing and engaged in something he enjoys, he managed two karate lessons this week and was ok. But it does seem that the school environment makes it worse. Yesterday morning he looked absolutely wretched and I felt awful leaving him at school. I thought that he may bounce out of it if he's involved in something. But they called us back less than an hour later. He told me that he was struggling with things he normally finds easy, like times tables etc.

I worry that he is missing out on school and would like to help him find a way to manage it and still get on with his day.

[marceline]

Thanks Chao I'll remember that when we see the specialist. When you say 'knocked back into place' - how literal is that? What does that involve? Is this a sort of technique the NHS might be aware of?

[Chaoscarriesonagain]

I heard it from a friend who is into mixed martial arts.

I believe it is a medical practice; lying on a table and hashing the head moved into a sharp position that rebalances. Supposedly not painful and over in seconds. Now I can't vouch for this and it wouldn't work for Ménière's , but it may be worth a mention. I'll see if I can find any info online!

[marceline]

Thanks Chaos - sounds interesting. I have read about a form of physiotherapy that encourages the brain to compensate - I do hope we get some sort of help soon!

[wiltingfast]

Knocking your balance "back into place" [hmmm] think that is highly unlikely to be true tbh! Your balance is managed by fluid in your ears isn't it? I was told the fluid gets in a spin and causes your vomiting centre to react.

I never heard of anyone else having this believe it or not! I've suffered on and off for years and I always suspected the GP was making it up to get me out of the office!

Anyway, I find bright lights (fluorescent esp) can trigger it, a bad shock, reading on a computer, I can't look around v sharply, can't read in car, have to sit in middle of bus. What happens with me is I get into a terrible cycle of voliting and cannot stop. I carry valoid tablets all the time and take one at the first hint of it tbh. If I don't manage to head it off, I have to go and lie down in a dark room and essentially sleep the wost of it off. An episode is usually v bad for 24-48h but can linger vaguely for a few weeks.

It's a horrible thing but manageable for me but I'm an adult and v aware of the likely triggers and warning symptoms. V hard for a child to manage it. Poor fella, I do hope it's something else. It's not life threatening but you'd definitely rather not have it.

I'd check out the shcool environment, sounds like there is something there triggering it. Are the lights v bright? Maybe if he could be seated near a window? Are they using the computer a lot? Dim the screen. If he's in the throes of an episode that hasn't been managed down, he will find it v hard to read for example. Instant nausea. Watching tv also not good.

Maybe you could ask your GP for something to help the nausea? Ginger is supposed to be a good natural remedy. But depends how bad the nausea is. As I said, they give me valoid but I'm not sure if they'd give it to an 8yo.

Hth

[wiltingfast]

Oh, one last thing, I find if I go too long without eating (usually lunch to dinner when working) that can trigger it too for some reason. Even half a banana eaten on the bus home staves that off.

So make sure he has some healthy extra snacks with him?

[marceline]

Thank you for the advice wiltingfast. Sounds pretty awful, I do worry about this becoming a chronic condition. I'm going to speak to the school tomorrow if I manage to get him there!

[cestlavielife]

My daughter has had nausea and dizziness since June (don't want to scare you...) if you in or near London get referred to the "dizzy" clinic at Nuffield ent centre. They can run vestibular testing which can identify of indeed it is an inner ear issue on one side. Child sits ina spinning chair with probes that check where eyes looking, chair spins and lights move it shows things like nystagmus etc. hard to explain hut basically it is a test which can identify if it is inner ear.
My dds tests were inconclusive. Tho labrynthitis was one diagnosis at one time.
The manoeuvre is recognised and called ePley manoeuvre and some gps will do it.

[cestlavielife]

An MRI may show evidence of inner ear issues and also rule out anything else. In My dd case MRI shows some anomalies in structure but they they think are incidental findings ie always been there. However she had vision testing and this shows a visual field deficit. We awaiting to see neurologist.
In the meantime she has working diagnosis of "post viral fatigue" And not really improving.

If it is true labrynthitis then it should improve over time and also some exercises physio may help.

They gave dd stemetil but it didn't help. Nor cinnarizine.

[cestlavielife]

Epley manoeuvre
www.ncbi.nlm.nih.gov/pmc/articles/PMC2077628/

[marceline]

cestlavie Since June, good grief! How is she managing? Is she able to attend school and get on with life? Have you found any natural remedies that help? I've been using pressure points with my DS and sometimes it seems to improve the nausea.

[marceline]

Sorry cestlavie, xpost. Thank you for the link, very interesting. BPPV was also mentioned by the GP today. So i hope if there is a proven treatment they do offer it to him.

I hope things improve for your dd, sounds like she's been through a hard few months!

[cestlavielife]

She is 12 and attending a small tutor group run by lea for kids with medical needs. Up t ten hours per week. This has helped her gain some sense of "normality" . But no school and she won't go until she "is better".
She says.

Have had psych assessment but that inconclusive too.
Is a nitemare tbh.

But you need to get referred and run all relevant tests including MRI really.