Infant vertigo?
by KGans, May 27, 2010
My 7 month old has had, since birth, odd "spells". It is always associated with movement - laying her down, picking her up mostly. When you lay her down, she "freezes" for about 2-3 seconds, and her eyes get unfocused. These spells happen for several days in a row, then vanish for weeks. The last time she had them was early March. Now, in May, she started them again, but the next day she added something strange. Instead of just the freezing, grimacing and unfocused stare, she also started snapping her head to the left when laid down. She has always had a strong leftward preference to her head, to the extent that strangers have commented on it. She does not have toncillis (sp?).  When pulling her to a sitting position, her head would sometimes loll forward. This uptick in severity sent me to the ER at Dupont with her. An EEG showed no signs of seizure activity (she did do it during the EEG), and the neuro said it did not look epilleptic in nature, and was likely benign. We are doing a follow up 24 hour EEG next week. I am wondering, though, if it could be related to an inner ear problem, such as vertigo? The fact that it is always associated with positional changes made me wonder. And if it is not vertigo, and not seizures, what else could it be? Would an EEG show a brain tumor? Thanks for any input!
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Member Comments (82)
by hanahana, Jun 02, 2010
I am so relieved to find your post.  We have been having almost exactly the same thing with our daughter since she was eight days old and I have searched and searched the internet for info and have found NOTHING that even closely resembles what she is doing until I saw your post.  Please keep me updated on your baby and what you all found out.  I posted something on the forum about my baby and have gotten no response.  Here is what I posted:
Ever since my daughter was 8 days old (she is 7 weeks now), she on occasion has had episodes of eye and eyelid rapid fluttering with certain position changes.  These are definitely involuntary episodes. She will sometimes go a week or two without me noticing an episode, but they sometimes happen 2-3 times a day. They most frequently occur when taking her from and upright position to a laying down position.  The episodes seem to occur immediately after her head touches down. I have also witnessed the episodes occuring when she has been on her belly from tummy time and I pick her up and turn her around.  Again, the episodes consist of her eyes and eyelids kind of going "haywire" involuntarily, and last for 5 to 10 seconds.  She seems to be normal before and after the episodes occur and also seems to be developing normally for her age.  She has been to see her pediatrician several times who is not convinced this is something to be concerned about, but she is puzzled.  We wanted an EEG, so one was done and a follow-up appointment with a pediatric neurologist was scheduled.  He is puzzled by these episodes as well, but is unsure if they are concerning.  The EEG was "inconclusive". Not "normal" but not "abnormal" either.  The neurologist said there was maybe some increased left sided activity, but was not too concerning.  We have basically been told to watch her to see if she grows out of it, and try not too worry too much.  My husband and I are the only ones who have witnessed her "episodes".  They are scary to see, because they look so abnormal to me.  I can't find anything on the internet stating another child has had these exact episodes.  I am an RN and have not seen another baby do this.  Has anyone seen this in another infant, or does anyone have any helpful info?

My baby is not almost 11 weeks old, and she recently went 3 weeks without an episode, but as you describe her eyes seem to have a period of being unfocused and she manifests it by quivering.  Her neurologist noticed she had a preference for her left side and told us to work on getting her to look to the right.  We have done that and she seems to have "evened out".  She can move her head to either side, but prefers her right side when on her tummy and her left side when on her back.  We wonder if it is just from the way we hold her.  Can you snap your baby out of the episode? We are in the process of trying to figure out if we can.  I just got it on video for the first time yesterday, and have an appt. to show the neurologist on Friday to see what he says.  I also have an appointment with a pediatric ophthamologist at the end of the month.  

Does your baby seem to be developing normally for her age?
by KGans, Jun 04, 2010
It's interesting they both had the leftward preference. My baby is much more balanced now (we also worked on it), but still favors the left - sleeps with the head that way mostly, prefers to roll to the left from her tummy, and ***** that thumb. The fact that it also disappears for weeks is puzzling, too.

My baby's episodes are so short (3 secs about, although they did seem longer when she was your daughter's age) that it is impossible to try and snap her out of them. By the time you notice it, it's over. I also had mine on video, and the neurologist looked at it and said that it "did not look epileptic in nature." Which is encouraging. She also had an episode while hooked up to the EEG, and nothing abnormal showed at that time.

They also ordered an EKG, and that was normal, too. Whatever abnormal waves they were looking for were not present.

Aside from being slightly behind in things like pushing up (she always hated tummy time), she is developing normally. She was a couple of weeks early (37 weeks), which may also explain the lag.

Did your docs have any worries about the baby in utero? My docs were concerned for a time because it seemed like her head was always craned backward. The issue appeared to resolve itself in the last week or so of pregnancy. However, I can't help but wonder if the neck could be involved in this mysterious condition, since it appears to be related to movement.

I have the 24 hour EEG next week, and the follow up at the end of the month. I will let you know what the findings are. Please let me know what the eye doctor says.

by KGans, Jun 04, 2010
Don't know what the asterisks are about in the last post. It should read "*****", as in s-u-c-k-s.
by hanahana, Jun 04, 2010
It is very puzzling that they are so similar.  It is also puzzling that no one seems to have run across another baby with these symptoms.  All MD's we've seen and consulted seem to think it is just a wierd newborn thing that will go away, but it still really freaks me out, because I have never seen another baby do this before.  I have truthfully been sick with worry, and still am somewhat. We took our daughter for a follow up with the neuro today.  We were just recently able to catch an episode on video the other day, and were able to show him for the first time today.  He as well said it did not look epileptic in nature.  Which like you say is reassuring, but then also like you say, what is it? if anything...  I have never seen a child who has epilepsy that began as an infant not have problems later in life, and that is what has kept me so concerned.  It is interesting that you wonder if it involves the neck somehow, because one of the most concerning things to us has been that our daughter seems in pain when we pick her up sometimes.  She will be fine and happy and when picked up at times, she cries in obvious pain.  It kills us to hear her cry like that.  But, just like her episodes the sensitivity to being picked up comes and goes.  I did not have any major concerns with my pregnancy.  She was not a very active baby in utero, but moved enough as to not cause concerns.  It is interesting about craning the neck though, because I have noticed that she prefers to sleep on her left side with her neck craned backwards (as you describe).  I haven't really thought much of it.  Just thought that she was comfortable that way.  Her left pupil is also slightly larger than her right at times.  Both react equally to light, and her neuro says this can be a normal difference in people.  Her left eye seems to be a little slower in following objects than her right, but at 11 weeks her neuro also says that infants nervous systems have to mature to get all of these systems in order.  She did not have any episodes from May 8th to May 28th, and since then has had two days in which she had 3 to 4 episodes in the same day, and the episodes did seem shorter now than they used to be.  It is encouraging to her doctors that they are not becoming more frequent.   Our daughter has also always hated tummy time too, but seems to tolerate it better as she gets older and is able to hold her head up somewhat.  She was born 9 days early.  Our first daughter was always ahead in her milestones and is still very advanced at 3 years old. This daughter seems to be a week or two behind in her milestones, but is meeting them at her own pace.  She holds her head up well for her age and is very vocal and happy.  Everyone comments that she is the best, most content baby they have ever seen.  I have been watchful of her milestones out of being paranoid because of her episodes, but know that babies meet their milestones at different stages.  The neuro today said we could either continue watching her, because he still thinks and hopes it is nothing, but also said that if we don't do follow up tests and it is something, we could obviously miss something important.  We all agreed to an MRI to be scheduled in a few weeks.  He recommended doing the MRI instead of the eye doctor, and before any bloodwork, because he said as long as it is not something metabolic that could only be showed by blood work, the MRI should be sort of the test to end all tests, and show the major concerning things we would be looking for.  He said that the only reason he would feel inclined to do blood work after the MRI are if it were abnormal or if it were normal, and our daughter's symptoms continue to worsen.  We obviously hope that the MRI is normal and that she continues to improve.  We are really hoping all of our worry will be for nothing, and that this is just another wierd thing babies do to keep us worried.  Here is a link to the only other info I found on the internet that is basically like describing a carbon copy of my daughter's episodes.
by KGans, Jun 05, 2010
My baby has never seemed in pain when I pick her up or move her. I wonder if your daughter cries in pain, or because the movement is making her feel strange and scares her? My baby has also been much better about tummy time as she has gotten older, stronger, and more coordinated.

That other link you sent sure does sound like our same problem. I'm going to run the vertigo hypothesis past my pediatrician next week when I see them.

Like you said, hopefully they'll all grow out of this! And it is strange that none of the doctors have seen this before. The ER doc at Dupont suggested that it might be what's called a shuddering spell, which looks like a seizure but is actually benign and is something they grow out of. I looked on YouTube and saw some videos, and the ones I saw did not look like what I am seeing, but there is so much variety in them, these could very well be another kind of shuddering spell.

You will likely have the MRI before I have my follow-up from the EEG (or about the same time). Please keep me posted, and I will do the same.
by sevenheavenmommy, Jun 10, 2010
HI, i just read your comments, and my baby did cry when moved, picked up, laid down, etc. He had leg ticks and would stare off to one side a lot when he was around 2 months. He started having noticeable seizures at 5 months and is on medicine. He is developmentally behind because of the seizures. He has an OT that comes every two weeks. We have discussed the crying involving movement, and thought that because of his low muscle tone, it was scarry for him to be picked up or laid down. As he has developed more tone, he isn't as fussy about movement.  He is still happiest when on his back, and has hated his tummy (we are working on that :)  Anyway, he is doing really well on his medication and we are hopeful that he can catch up on his development. I am not saying this to scare you at all. I think though if you have concerns, continue watching and asking questions, you are your child's biggest fan and advocate. Good luck with everything. I hope he grows out of this and you can stop worrying!
by KGans, Jun 10, 2010
Hanahana - I saw my pediatrician a couple of days ago, and they had spoken to the neuro prior. There was a note that the neuro told them that "upon closer inspection, there MIGHT have been something on the EEG done in the hospital." Just what I needed to make me even more worried!

We just finished the 24 hour EEG today, but will not get the results back for a couple of weeks. Unfortunately, my baby did not have any of these episodes while hooked up. I knew this would be the case, because they disappear for weeks at a time after she has a few days of them. I asked if they could still "see" siezure disorders in the EEG if she wasn't actively having the episodes, and the answer was "sometimes." I will let you know what they say in 2 weeks.

Do you have your MRI scheduled? Is it just of the brain, or are they doing the neck, too, due to the pain you mentioned? I am eager to know what your results are!

Did you reach out to the woman who posted the link you sent me? I'd love to know if she got any more information, or ever got a real diagnosis/treatment.

I am beginning to think this really might be a form of vertigo. Just yesterday my daughter discovered that she could roll to reach toys and get where she wanted to go, so today she has been rolling like mad - hard and fast. Once, for just a split second, I thought I saw "the face" as she rolled over quickly. It was so fleeting, I could be wrong, but I could swear it was there.

I also wanted to ask if there is a history of deafness or other ear issues in your family? If this is vertigo, the ears would be the culprit. My husband has congenital nerve damage, so I am wondering if my baby might have ear issues manifesting as vertigo. I wondered if you had a similar family history.

Keep in touch!
by hanahana, Jun 13, 2010
Thank you for you input. I am an RN and have been reaching for answers.  We continue to be actively involved in our daughter's symptoms.  We are awaiting our MRI and some answers.  Thanks again for sharing your experience.  Any helpful info is greatly appreciated.
by hanahana, Jun 13, 2010
Thanks for keeping in touch.  I have not really had much too keep in touch about recently.  Our MRI is not scheduled until June 29th.  Insurance would only approve a cerebral MRI, so the neck will not be included.  She is able to hold her head pretty steady, but likes to sleep with her head and neck arched backwards when on her side and her head and neck arched backwards when in a swing or bouncy seat.  After she has been sleeping like this for a while she seems to have a "floppy neck and head" and it takes some time for her muscles to regain their strength. Her head tends to want to stay "stuck" over to the side that it was positioned in while sleeping for a few hours, like she has a stiff neck.  This however does not concern me too much, as I just think this is how she is comfortable sleeping, and I believe this will get better as she gets better muscle control.  Did you ever notice this in your daughter when she was younger?

Our daughter has not been crying recently when being picked up.  She does seem to have grown out of that (for now anyway).  We'll see if it lasts.  That symptom definetely came occasionally just as the wierd eye episodes only come occasionally.

She hasn't had an episode in the last week and a half.  When she is not having episodes I am able to rest pretty easy, because everything seems normal.  
I too am more convinced of the vertigo theory than ever, because our neuro too said that the video we showed him of what our daughter was doing did not look epileptic in nature. I have not had a doctor confirm this diagnosis or give it credibility, but I just really am starting to feel stronly about that diagnosis, because my baby really seems pretty normal! I dont' know how you feel about your baby.  Does she seem to be pretty much a normal baby?
I "induced" the episode I got on video by sitting her up and laying her down repeatedly so I could get an episode on video.  (I would not normally do this, because I hate seeing the episodes, but she had just had an episode about 5 minutes prior, and I knew she would be more susceptible to having another episode... I wanted to be able to show our doctors what she was doing).  Everything that I know about seizures is that you can't really prevent them... and I truly believe that these episodes can be somewhat preventable by being careful with position changes.  You may want to check out some info on
Benign Positional Paroxysmal Vertigo.  It is common in older people, but a lot of the details really seem to apply to what my daughter is doing.  It mentions the position changes causing a nystagmus which is rapid eye movements.  The only discrepancy I find in this with my daughter is that nystagmus does not involve the eyelids, and when my daughter has an episode her eyes and eyelids quiver for a few seconds, but I still think it could be applicable. (The problem with babies is they can't tell you what is happening!) Here are a few links:
There are a few more websites that are better than these, but I can't find them in my search engine right now.  I would google "Benign Positional Paroxysmal Vertigo in Babies".

It is interesting that you mention the ears and hearing loss. The congenital nerve damage in your husband, has it caused him to be somewhat hearing impaired?
I do have a family history of ear problems.  There is a very significant hearing loss problem on my dad's side of the family. However, this is profound hearing loss occuring with age.  My dad is hard of hearing at 55.  My grandpa is 83 and is practically deaf, as well as his sister.  My aunt too was hard of hearing (she however passed away at 42).  These hearing losses all get worse each year with age though.  As far as other ear problems: My mother and myself have been diagnosed since a young age with chronic eustacian (spelling?) tube dysfunction.  I had many ear infections as a child and had to get tubes in my ears.  She had her ears lanced as a child.  We wtill have problems with drainage in our ears and need to "pop" them frequently.  We both have a little motion sickness in the car on curvy roads, but have no vertigo problems other than that.  I believe I will have hearing loss with age like my dad, because I hear well, but my hearing is not as great as I think it should be for my age (I'm 25).  My first daughter has had virtually no ear problems since birth and she is now 3.  I also do not know of any other children in my family with ear problems.  This daughter seems to hear very well and passed her hearing test in the hospital.

As far as your daughter's EEG possibly showing "something".  What my doctor told me and from what I have read, EEG's are difficult to read in babies, because it is common for them to be atypical in results because of an immature brain and nervous system. My neuro said they are very difficult to read in infants and babies.  I do not know the age where all of this immaturity goes away and the EEG will just show either positvely normal or positvely abnormal.  If you find out, let me know.

I have not been able to get in touch with the other lady who posted on the other site.  The site is a few years old, and I could not find an option to post anything.  If you find a way, let me know.
Again, thanks for posting and keep in touch!