BPPV in a 7-year old?

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Sorry this is long, but I figured details are often good for context...

2 years ago, an ENT in Mexico diagnosed my son with BPPV (he was 7 years old at the time). Interestingly, the ENT had suffered from BPPV as well since the age of 18.

My son was vomiting several times a day and couldn't keep food down - he did not have a fever or diarrhea. The thing that brought me to the ENT was the fact that my son also complained of dizziness and was swaying when he walked, much like a drunk would do (obviously he wasn't drunk though!) - and this didn't seem like a typical case of the stomach flu.

The ENT did the Dix-Hallpike maneuver and showed me the nystagmus. He performed the Epley maneuver after that, and my son felt much improved. We came back for a followup appointment a few days later and the Epley was repeated again... my son was back to 100% normal after that second visit. Everything that ENT told me was 100% consistent with what I've since read about BPPV.

Now my son is 9 years old, and the symptoms have recently come back, although much milder than what he experienced 2 years ago. I took him to his regular pediatrician here in Canada and as soon as I mentioned Mexico his entire demeanor changed... he said it was pure coincidence that my son improved so drastically after the Epley maneuver performed by the ENT in Mexico, and said since BPPV is so rare, it was likely just the flu making him vomit back then and not BPPV. He thought it was highly unlikely that what the ENT showed me was truly nystagmus (I disagree though as I've watched countless videos on it and what they show is exactly what I saw at that ENT visit 2 years ago).

He looked up a condition in his textbook listed as "Benign Paroxysmal Vertigo" (note, the word "Positional" was missing) and told me it's associated with migraines, and that the textbook says it's a recurrent condition so if it's taken 2 years to come back, what my son has is clearly not recurrent and therefore is definitely not "Benign Paroxysmal Vertigo".

Then I researched "Benign Paroxysmal Vertigo" when I got home, only to find out that the pediatrician looked up the wrong condition entirely because "Benign Paroxysmal Vertigo" (aka "Benign Paroxysmal Vertigo in Children", or "BPVC"wink is completely different from "Benign Paroxysmal Positional Vertigo" (BPPV), despite sounding very similar and being easily confused.

So, since I didn't want my son to suffer longer than necessary, I watched a ton of YouTube videos on how to perform the Dix-Hallpike maneuver, watched a bunch more on what the nystagmus I should be looking for looks like, and did the procedure on him. The result was nystagmus in my son's right eye.

So then I watched a bunch more videos on how to do the Epley maneuver to treat BPPV in the right ear. Did the procedure 2 times with a long break in between. My son didn't feel any better afterwards, in fact, felt a bit worse. sad  Then I bought an app called DizzyFix that uses your smart phone's positional sensors to help you perform the Epley maneuver with the correct positioning of the head... apparently it's purpose is to train medical students on how to do this procedure. Anyhow, I used the app and my son said he felt "80% better" afterwards.

Going forward, does anyone have any advice for me on what kind of specialist to seek a referral to for future? I've read that a neurotologist is a good bet?

Since the pediatrician let me down, I set up an appointment with a physiotherapist who treats people with BPPV... but since physiotherapists aren't covered by our healthcare system and I must pay out of pocket, I'd rather get a referral to an MD specialist since the right specialist should be able to advise us properly and it'll covered by what I pay in taxes already smile

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  • Posted

    I  have been suffering for 3months with vestibular disorder.  I have been to many specialists over the past 3 months.  What I can say is general primary care doctors really don't know much about this.  I have been to PCP, Nuero, ENT, chiropractor, and PT.  I have had to be my own advocate with this.  I was intitally diagnosed with BPPV in the hospital.  Then second time in the hospital-diagnosed with vestibular neuritis, on steroids which made me blow up and gave me about 50% relief. only up until last week did I start get treatment for Vestibular migraines.  Finally the meds for this have had a positive effect and after 3 months I am getting my life back.  I feel normal for the first time.   My PCP really has no idea what I am talking about.  My advice would be to see a Neorologist that specializes in Vestibular disorders and an ENT that specializes in Vestibular disorders. What I have been told is that this is a clinical diagnosis-meaning they rule out other disorders to finally find the one that responds to treatment.  I have read that the BPPV is rare in kids. Nueronologist is another specialist.  Do you have a children's hospital in your area? Google drs. That specializes in Vestibular disorders. I have a new appointment soon with a new doctor who is the head of the dizzy clinic and specializes in this rare but debilitating condition.  Has your son had the catscan and MRI? I had both of these at the hospital to rule out other issues. An ENT should test for Meneirs, labrinthitis, Vestibular neuritis, BPPV. And a hearing test should have been done. Try to Google Dizzy clinics/vertigo in your area.  When your son had these episodes-you mentioned dizzy- but did he feel like the world had titled? Like the floor was on the wall? I really wouldn't just go off of what one doctor in Mexico has said- especially given my personal experience of going to doctor after doctor trying to get diagnosed properly. Physical therapy(one who specializes in Vestibular problems ) has really helped me in learning how to walk and focus again.  Does your son have "foggy brain?" 

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    • Posted

      I really appreciate you sharing your experience - thank-you so much for the advice!

      re: "Has your son had the catscan and MRI? I had both of these at the hospital to rule out other issues."

      No, my son hasn't had it.

      Because the Epley worked, and the diagnosis was textbook perfect (I've read through the diagnostic criteria), I've assumed the diagnosis was correct. But it wouldn't hurt to double check.

      re: "An ENT should test for Meneirs, labrinthitis, Vestibular neuritis, BPPV. And a hearing test should have been done."

      All good ideas, thank-you!

      re: his dizzy episodes

      It feels like he's still, but the world around him is moving. If he keeps his head straight, no sudden changes in position that tilt the head, symptoms are way better. If he looks straight up suddenly, vertigo increases temporarily. Ditto for if he looks down suddenly, or turns over in bed.

      re: "When your son had these episodes-you mentioned dizzy- but did he feel like the world had titled? Like the floor was on the wall?"

      I don't think so... I think it just feels like the world is spinning a bit, but I'll double check with him.

      re: "Does your son have 'foggy brain?' "

      No.

      re: "Try to Google Dizzy clinics/vertigo in your area."

      I found a physiotherapist with a Masters degree who specializes in vestibular disorders, teaches other physios how to treat it, and teaches courses at the university here... waiting to hear back from her. Will also look into other professionals who may be able to help.

      re: " I really wouldn't just go off of what one doctor in Mexico has said- especially given my personal experience of going to doctor after doctor trying to get diagnosed properly. "

      Yeah, it was a GP in Mexico who diagnosed it... then he called his friend in Mexico City who is an ENT to explain his findings and double check if he's on the right track, was told yes, and to refer us to an ENT for further confirmation, so that's what he did. The ENT we saw confirmed the diagnosis and seemed quite familiar with the condition because he also has it. But for sure, a second opinion from a specialist to confirm is always a good idea just in case a mistake was made.

      Thanks again for your detailed reply!

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    • Posted

      “It feels like he's still, but the world around him is moving. If he keeps his head straight, no sudden changes in position that tilt the head, symptoms are way better. If he looks straight up suddenly, vertigo increases temporarily. Ditto for if he looks down suddenly, or turns over in bed.”

      Isn’t that considered positional vertigo aka BPPV? That’s what I thought..if you’re moving your head in different positions and get vertigo. So I assumed it was BPPV..the ear crystals got loose in the inner ear causing vertigo.

      I’ve had that positional vertigo  3 times(twice in December 2016 and once in February 2017) and I got it from turning over in bed during the night. And it felt like the room was spinning.

      I did go to my primary doctor and they weren’t very helpful. They misdiagnosed me with a heart problem.

      I never went to an ENT or any other doctors then. I’ve just been researching this info on my own.

      And I never got the epley done on me..I just let it heal itself on its own.

      It’s just so weird that doctors never seem to give a correct diagnosis..you always have to go for a 2nd and 3rd opinion. 

      And also, I thought nystagmus is a common symptom for BPPV, so that’s why I assume that’s what your son had. 

      Well hopefully you find your answers and find good doctors to help your son out.

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    • Posted

      re: "Isn’t that considered positional vertigo aka BPPV?"

      Yes, he was diagnosed with BPPV by the GP in Mexico, and confirmed diagnosis by the ENT in Mexico (who, coincidentally, also has BPPV). I think the diagnosis is likely correct based on the way it was diagnosed (he even had the nystagmus during the Dix-Hallpike maneuver), his symptoms, and the fact that Epley's done properly led to a massive improvement.

      It's the pediatrician here in Canada who thinks it's so rare in kids that there's no way my son has it. I think the pediatrician is wrong though... he doesn't seem to know anything about it, and didn't even know the diagnostic procedure for it.

      So what I'm after is someone familiar with this condition, who knows how to treat it effectively when a relapse occurs, so my son doesn't suffer with vertigo/nausea for any longer than necessary at those times. Fingers crossed the physiotherapist we're going to see will be that person.

      I'd also like my son to get a complete evaluation to rule out other conditions that may be contributing to it, so we can deal with this in the best way possible.

      re: "It’s just so weird that doctors never seem to give a correct diagnosis..you always have to go for a 2nd and 3rd opinion. "

      I think it's like that with anything uncommon. sad They are good at the stuff they see over and over again every day (ex. high blood pressure, pneumonia, strep throat, high cholesterol, diabetes etc.) but the stuff they maybe only come across once every year or two stumps them. And many of them don't refer patients to a specialist soon enough, because they're overly confident in their own abilities, and prefer to try to handle it themselves (even though as you noted, they are often wrong due to a lack of experience in the matter). 

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  • Posted

    I also was told I had BPPV with the  Nystagmus.  I was treated for this condition for at least a month. But apparently that wasn't accurate.  Everyone I knew kept asking me why I had this condition so long- the Eply maneuver should correct this after a few times.  After seeing the PT and ENT and being hospitalized a second time they diagnosed me with vestibular neuritis.  But- that appears to be wrong too.  What I have learned after 3 months of hell is that this is a clinical diagnosis-meaning they rule out other conditions from the symptoms.  It seems they just initially diagnose people with the BPPV then go on from there.  I don't know anything about your insurance in Canada- but i would try to see an MD who specicializes in these conditions.  Because thee are many that mimic each other with slight variations.  I ask about the floor on the wall as that was my experience.  But the world was also moving around me. Hard to walk, talk, and I was also leaning towards my affected ear.  If your insurance covers ENT, Nuerologist, Neuorontologist, I would start there.  PT has been so helpful, but what I learned is that not many specialize in vestibular disorders.  Primary doctors know nothing about this- I have had to be my own advocate on this pushing thru- don't accept he will get better with time.  Don't accept just wait it out. It's a nightmare and scary.  It's isolating.  And you feel you will never be normal again.  Things like going grocery shopping is so scary and can bring on an attack. He really needs to be checked to rule out other conditions.  The ENT should do a hearing test too, to rule out meniers.  

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  • Posted

    BTW- does your son have ringing or buzzing sounds in his ear or ears?? I have for months- but the only time I hear it is when I'm home and it quiet and I'm laying down on the couch.  Ask him. I too spent months getting dizzy looking down, looking up and side to side.  It's no way to live not being able to move your head.  I also would get dizzy tossing in bed at night.  All of these symptoms are going away with my current course of treatment- the nortriptyline.  Which to me finally means it's Vestibular migraines.  3rd diagnosis and 3rd course of treatment.  When I was hospitalized the first and second time- just moving my eyes made me vomit so violently.  Does your son break out into a drenching sweat before an attack comes on?? I do- and apparently it's a sign of vertigo.  Drenching sweat.  Ask him- he may not have told you or thought about it.  Good luck and keep pushing and demanding like you are. It's the only way I started to get better.  Had I just listened- I would be immobile, with no life.

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