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!
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?
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.
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.
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.
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!
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.
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.
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!
When you asked about sleeping with her head arched backward, I was going to say "no" because my daughter never slept that way in her crib (she favors the hands behind her head position - but the head is always to the left). Thinking back, though, whenever she slept in a chair - bouncy seat, swing, car seat - she did have her head left AND arched back. So, yes, she did do that. I never specifically noted her being more "floppy" after sleeping that way, but she was slow to develop good head control, so maybe it just wasn't as noticable in her.
Yes, my baby seems perfectly normal when she is not having these episodes. She has hit or is near all her milestones, as far as I can tell. How is your baby's weight? Mine has always been in a very low percentile (healthy, but very low - 3rd to 5th) even though her height is in the 50th percentile. The doctors do not seem at all concerned about any area of her development, although we do keep an eye on her weight gain.
I, too, "induced" the episode I got on film for my doctor. Like you, she was having them, so I knew I could make her have one, and I did. When we got to the ER, the intake nurse said that "seizures cannot be induced by motion." If this is true, then these are not epileptic seizures, as both our neuros suspect.
Perhaps my baby's EEG will be less inconclusive than yours because she is so much older (7.5 months). I will ask about the immaturity when I see my neuro, if I remember.
I also found Benign Positional Paroxysmal Vertigo in my web searches, and was struck by the similarity to what we are seeing. My daughter does not seem to have the eyelid "flutter" that you describe, although her eyes do get squinty, so maybe it's the same thing. Perhaps, because of their nervous system's immaturity, a nystagmus in babies might include symptoms not seen in adults. I did ask my pediatrician about vertigo, but they said they had no idea about it in babies, and to ask the neuro.
My husband's hearing loss was first noted when he took a hearing test in grade school, and has slowly worsened throughout his life. He is 37, and does use hearing aides some of the time. My baby passed her hearing test in the hospital, and gives every indication of hearing just fine, but the doctors want yearly tests, given the family history.
I will let you know what my neuro says! Good luck on the MRI, please keep me posted.
My baby is petite for her age. Much more so than her older sister. My oldest daughter has always been in the 97% all the way around (height, weight and head circumpherance). But she does have a little "chubbiness" to her. At her 2 mo. appt. she was in the 45% for weight and 20% for length. She is mainly very short for her age.
In trying to rack my brain of things about her we have noticed that seem a little different,and I thought of a few more things. (I probably wouldn't have given these little things a second thought, had I not really been looking for things to notice! (If you know what I mean.) If it weren't for the episodes she has, I would pass these off as probably nothing, and still probably think they may mean nothing.)
Her left pupil when dilated is about 2mm larger than her right, but I have read and heard from the neuro, that this is a very common congenital thing in some people. She rolls her eyes back in her head quite a bit when nursing and when getting sleepy. I remember my oldest daughter doing this as she was going to sleep, but Sophie will sometimes do it then open her eyes back up before going to sleep a few minutes later. It does not happen repeatedly or for more than a few seconds, but it does look odd from time to time. I can snap her out of it as far as I can tell. I do not think it looks like seizures, but because of the episodes we have noticed, I do not want to leave anything unnoticed.
I still think the BPPV or BPVC seems like the most right on diagnosis I've read. It seems to me like some doctors need to do some research and studies to prove that this can happen in infants. It seems like no one has really given it a lot of thought.
I had my follow-up appointment with the neuro yesterday. The 24-hour EEG came back normal.
I asked if this could be vertigo, and he said that if it was, I would have noticed her eyes going crazy. I think you said your daughter's do that. I have never noticed my daughter's eyes "shaking" but honestly, I never looked that closely at what her eyeballs were doing - I was just distressed by her overall rigidity and dazed look. If she ever has another spell, I will look carefully at her eyes.
What did concern him was her strong preference for the left. My daughter is, not surprisingly, a lefty - when given a choice, she always reaches, grabs, and holds with her left hand. Not that she doesn't use the right - if what she wants is closer to her right, she will grab with the right. But if you hold something in front of her, equidistant from both hands, it is always the left. My neuro says that babies should not show "handedness" until about 18 months, and that such a strong preference for the left hand could mean that the left side of the brain (which controls the right side of the body) has some issue. He didn't go into what all those issues could be, but I'm sure we both have a pretty good idea what some of them could be - tumor, aneurysm, stroke. He also didn't seem to think that her language skills were where they should be, and pointed out that the language centers are also located in the left side of the brain.
Personally, I am not that worried about her language skills. He seemed surprised that she is not saying Mama and Dada yet, but I never met a 7 month old who did. She babbles all the time and understands a lot of what I say (and sign - we are trying to teach her sign language, too).
So, he wants an MRI. We will have ours Aug 3, with the results Aug 5. It will be interesting to compare our results with yours.
I think that's all the new information I have. Keep in touch! I hope the MRI goes well.
On Friday, the neuro had said that if she started having episodes again, to bring her to the ER so another doc could see her "in action." Well, she started up again on Sunday, so I took her back on Monday. A neuro nurse practitioner AND a neuro (I'll call him neuro2) saw her.
They tried to get us in for another EEG, but there were no machines available. Both said what neuro1 had said - they strongly felt that this was NOT a seizure, although neuro2 did say that it could be, but we wouldn't know for certain unless we could get a few of them on EEG. He looked at the video I had taken, too.
I mentioned vertigo, and neuro2 said mostly that hits adults, but it was possible it could be something weirdly rare like that. He said there is definitely something paroxysmal going on, but just what is hard to tell right now. He did not feel it was anything dangerous or that required immediate attention. He felt the MRI would show us that all was clear physically/structurally, which left us with the same question: what IS it?
What he found most baffling was the cyclical nature of the episodes - that they disappear and recur, quite often at the same time of month (they usually happen at the end of the month). He said that anything like seizures or vertigo or even reflux (which the ped had suggested) would happen all the time, not be confined to a 3 day period once a month. So the plan is to get the MRI, and also schedule a video EEG for the end of August, in the hopes that we will have her hooked up while she has these episodes. I believe it was a 72-hour EEG he was looking for, but it doesn't say on the discharge paperwork.
Your MRI is tomorrow, I believe. Good luck, and please let me know what you find. I am wondering if at any point there would be benfit to having our neuros talk to each other?
Something I forgot to mention. When I brought up vertigo, neuro2 talked about BPVC, but said that if it was migraine activity, it should manifest itself in other types of odd behaviors, too, not just the vertigo. Plus, there is no migraine history on either side of the family.
I was reading you all's posts, and I should mention a few things that might help rule out other possibilities: One, if you haven't already, have an opthalmologist check out your children's eyes. Two, if you haven't already, take your children to an ear nose throat ENT doc to make sure their ear canals are not infected or if there's problem with the inner ear. Three, let an allergist see your children, just in case it's a food or environmental thing, even tho their digestion and so forth may be fine. I will be VERY interested in you all's MRI results, and also if any of the items I mentioned have anything to do with what's happening to your kids.
Interesting info. I wouldn't worry about language development either at this point. I do not know of a 7 month old saying mama or dada either. It is a very good thing her 24 hour EEG was normal. My daughter had her MRI today. It was a difficult morning for all of us! The procedure itself went fine, but they had to give her an IV and she was a difficult "stick" because she couldn't have anything by mouth for 4 hours beforehand... so that made her a bit dehydrated. They had to stick her 6 times! She was miserable, but afterwards they gave her something to make her sleepy and all was well. The results should be back tomorrow or the next day. I am very anxious for the results, but deep down feel that everything will be normal.
The fact of the matter is that my husband and I both feel that we have a very normal baby. She seems to be progressing very well, and the "episodes" seem to be spacing out and becoming shorter and more mild. She sometimes seems a little "off balance" with her head sort of tilting to one side when upright or on her tummy, but after a few hours or a day it "evens out". But, I truly feel like that could definetely be a symptom of an ear problem, because children with frequent ear infections often seem dizzy when walking or "off balance". My mom said I would sometimes walk off balance as a one or two year old, and I had to have tubes in my ears. Her episodes seem to be happening about every three weeks. Because of all of this my husband and I have both agreed that if this MRI comes back normal, we are going to give all of the tests a rest unless things get worse or a new very abnormal symptoms should arise. We feel like if there was something serious going on that the MRI will show it and more tests would just be putting her through unnecessary suffering. It is very reassuring that both your docs and mine feel like it really isn't epileptic. I truly believe if it were epileptic one of your EEG's would have shown at least a little something, especially since she had an episode during the first one. Do you feel the same? Or do you still feel like it could be epileptic?
My daughters leftward preference really seems to have "evened out" quite a bit. I would say I notice it from time to time, but not really to speak of. She rolled over the other day,and rolled to her right. I also have seen her trying to reach for toys with her right hand. I can understand you all being concerned about your daughter and her strong leftward preference, and I know you will be very reassured by an MRI just as we are anxious to get the result for our daughter's. Maybe she just shows a "handedness" preference at a much younger age than other children. I would say that if she seems developmentally normal and doesn't show right sided weakness that is a reassuring sign.
All of these things are so mysterious, and I know all of us (docs included) are grasping at every bit of info even though it would normally be insignificant just to figure things out. I don't know why, but I just feel so much stronger about the vertigo diagnosis (BPPV or BPVC) than anything else. It is the only thing that fits my daughter almost to the tee. Do you agree?
Thank you for all of the good information. One last question... Has your daughter had any blood work? Mine hasn't. I wanted blood work, but the neuro said it wasn't necessary. I'll let you know what the MRI results are. If you get a chance, go to youtube and start typing in BPPV, BPVC, positional nystagmus, etc. I'll include a few links that reminded me a lot of my daughters eyes. It is adults they are showing, but I have come to the point that I feel like I don't really care that doctors say it is almost "impossible" for infants to have vertigo. I feel like if it can happen in adults then how can they prove it can't happen in infants. Here are a few links:
These aren't exact examples of my daughter, but are similar. From all the research I have done nystagmus seems to vary quite a bit from person to person, so many of the people that pop up look different from my daughter, but it is reassuring to me that there seems to be others out there even if they are adults.
Also if our neuros would be willing, I would love for them to read these posts and communicate to one another. Someone needs to do a study of vertigo in infants.
Thank you for your input. I believe also that if indeed BPPV or BPVC plays a role in this, that an ENT would be the next step. My daughter had an appt. with a ped ophthamologist, but it has been postponed pending MRI results. Just out of curiousity, are you in the medical field, and if so, have you run across this in the past? If you have and have any pertinent info to share that would be great. The medical lingo you used in your post made me think you were in the medical field. Thanks!
I was a nurse assistant for a while, but what made me think of the eyes in particular is, on that TV program "Mystery Diagnosis," they had a little baby on there that tilted their head as one of the symptoms, and after going thru the mill with tests, an opthalmologist checked out the baby's eyes, and lo and behold, there's a condition where the ocular muscles are not working right, and so they lean their head so they can SEE "correctly." An operation was done on the child's eye muscles, and boom, the head went straight up. You might can go to the website for that program and do a search. But the ear thing is an equal possibility if the eyes are indeed okay. And allergy is kind of a last-ditch effort.
Our daughter's MRI was normal, and we are so thankful! Even though no doctor is able to give us a diagnosis for her, we feel very much at peace about everything. The MRI being normal has given me the answers I need for now, and we truly feel like in every other aspect our daughter is so normal. Again, I feel stronger about her having BPPV or BPVC everyday, even though it is not well recognized or studied in infants... If she continues with the episodes or seems to be suffering in anyway we are going to seek out the advice of a ENT Dr. (recommended to me by a family friend who recently told me about his experience with BPPV) in Orlando, FL. He specializes in balance and hearing disorders and is renowned for his work. So,I feel like we can rest easy for now... and enjoy watching her grow!
I'm very glad your daughter's MRI was normal! And I'm sorry she had a hard time with the stick - hopefully my daughter will have less problems, as she is older and her veins bigger!
Like you, I do not feel that these are epileptic. Something strange is going on, but I don't feel it is life-threatening or even life-altering (as in needing to take certain precautionary steps). The most baffling thing to everyone is the cyclic nature of this phenomenon, as almost every cause would seem to (logically) have to be present all the time, not just a few days a month.
While I agree that BPPV seems the most likely diagnosis, I still also wonder if there is a neck issue involved. My daughter just finished a recent "cluster" of episodes (4 days), and this is the first time she has been independently mobile on a large scale while having them. What I noticed was that it was not always movement from one plane to another that triggered the episode, but often it seemed more like the position of the head while changing position determined if she would have an episode or not. The farther craned back it was, the more likely and more severe the episode. This (and several other observations over time) has made me suspicious of the neck. So I am going to see if my neuro will authorize a neck MRI at the same time as the brain. I will also have my chiropracter have a feel to see if anything feels off in her neck. Of course, an ear problem would also manifest as a problem with head position, too.
Your daughter is following my daughter's pattern - my baby seems to have her "clusters" of episodes once a month - so, about every 3 weeks. My husband wondered if it might have something to do with my monthly hormonal cycle, even though I was not having my period yet (I am breastfeeding). My baby's also became of shorter duration per episode as she got older. I wanted to ask: do your daughter's clusters appear with no warning and vanish just as suddenly? In other words, they just start and stop, no gradual changes, just there and then not. My baby's seem sudden like that.
My daughter's "handedness" does not concern me overmuch. As you say, my daughter has evened out quite a bit as she got older. There is definitely no right side weakness, and she uses her hand frequently. But the neuro is right that the preference is still there, and obvious if you look. For instance, the other day she had a bin of toys on her right side. She took a few toys out with her right hand, then dragged the bin over to where her left hand could reach it, and proceeded to take the rest of the toys out with the left hand. But since I know early handedness can be a sign of neurological problems, it is best to get it checked out.
Our MRI is on Aug 3. We also have a 72-hour video EEG scheduled for Aug 30, in the hopes of catching a bunch of these on EEG, since she seems to have her "clusters" at the end of the month. A single episode on EEG is not definitive, and a bunch would definitively rule out seizures, and perhaps even point to what it really is.
Like you, I have no intention of actively pursuing this beyond the scheduled tests unless her symptoms worsen. I will have our eye doctor look at her when we have our yearly checkup, which we were going to do anyway since she has a clogged tear duct that does not seem to be resolving. I will tell him our concerns, and see if he can see anything. Out of curiosity, what color are your daughter's eyes? My baby's are blue, and at 8 months, see likely to stay. I know my husband (also blue-eyed) and his neice (ditto) are both VERY sensitive to light, and wonder if this sensitivity could have a role in this mysterious condition.
Our daughter will also have yearly audio tests, because of my husband's early congenital hearing loss. When we have her test, I will mention the vertigo possibility to the audiologist, and see what comes of it.
Yes, enjoy watching her grow! Since my baby is older than yours, if they really do have the same thing, you know she'll get to 8 months with no difficulties from these episodes.
I'll let you know what our tests show, and please update me if there are any changes/new info on your end.
Dear KGans (and Hana),
K, when is your yearly checkup with the eye doctor? Please tell him about the TV show I saw where the child's head was tilted, until they operated on the eye muscle that wasn't working correctly. Your child sounds exactly like the kid on TV. Such a simple thing, but caused a world of problems for him, until they fixed it.
H, has your child's eyes been looked at by an opthalmologist? Both of you talk a lot about your children's eyes, like they don't focus and one seems worse than the other. In the TV program, the infants grew to toddlers, both had a noticeable tilt in the head to one side. Once the operation was done, the boy's head was perfectly straight.
I know you will be relieved to have the MRI and get the results from that as I was. From what I understand, that is sort of "the test" to rule out most all neurological problems involving the brain. (Of course the MRI paired with the EEG). So to me, those tests are worth the peace of mind.
It is strange that the episodes are very cyclic and happen at such regular intervals. I too wondered if hormones may play a role, but thought it was doubtful. I am breastfeeding as well and have no cycle to play a roll in things. It does seem like they would be more random, but from what I have read and heard from a family friend who has suffered with BPPV, the calcium "stones" in the ear sort of tend to settle and then move around, exacerbating the symptoms in cycles. Our friend says he does remember the episodes sort of going away and coming back, and then happening in clusters. When our daughter has had episodes in the past, the most she has ever had in one day is 4 and the longest time frame has been for four days in a row. Here lately it seems to only happen 1-3 times in one day and then they disappear for several weeks. They do seem to come on suddenly and disappear. When she has episodes I tend to start being more careful with her position changes. I remember saying when she was very young and had just started having them that I felt like I could prevent the episodes, and now I know I can. The slower we lay her down or if we turn her over after being on her tummy a certain way, it seems we can prevent the episodes.
I can understand you being concerned about the hand preference at such a young age. My daughter is just now starting to reach for toys, so she is simply too young to be able to know that. I hope the hand preference means nothing.
We had a chiropractor see our daughter about a month and a half ago. He examined her head, neck and spine, and felt no abnormalities. From what I understand that with the condition, Benign torticollis of infancy, you can actually tell by examination of the infant whether or not they may have it.
My daughter's eyes are brown, like her dad's. My first daughter's eyes are bluish green like mine. I have not noticed any oversensitivity to light in any member of our family.
Have you all ever had any genetic testing done? Did you have any of the special bloodwork or amniocentesis during pregnancy to check for any problems? We chose not to do any of the bloodwork or anything, so I have no idea if something would show up.
I would be interested to see what the autiologist has to say as well as the ophthamologist. We probably will forego seeing the ophthamologist for now. We do not go to eye doctor for check ups, as no one in my immediate family has vision problems, and our insurance does not cover it. As she gets older if we see the need to, then we will schedule an appointment. If she continues to suffer, I believe I will seek out a very good ENT who is very knowledgeable about BPPV.
Definetely keep in touch. Would you mind sharing your e-mail address? I would be happy to share information with you about our names, where we are located, my e-mail address, and the medical team involved with our daughter in hopes that any possible collaboration between your doctors and mine might be able to figure all of this out! I was also thinking it might be easier to be more specific at times if I felt like I was sharing the information privately and not publicly.
Disregard my request for your e-mail in the previous post. I found a way to send you an e-mail through the site. I guess if you check your inbox on this site, you will find a message rom me with my e-mail included. Use it if you would like to communicate that way. If not, we will keep communicating on this forum. Thanks for the correspondence. I was telling my husband that it has truly been the key in me feeling like we may have almost gotten the answer to what is going on.
I'm sorry I got in the middle of you all's communiques. But I thought my info would be important for you guys. It's such a SIMPLE thing to have checked, and it is NOT that expensive, and if it's those eye muscles, what a shame your kids have gone on like this for so long when the solution was so simple. I'll quit coming to this post out of respect, hope your children find relief soon.
I'm not exactly sure how to respond to your last posts. I am guessing your comments are in reference to the inquiry in my last post to KGans. I appreciate any input and thoughts, as that is the reason I wrote on medhelp.com in the first place. (To hopefully find some possible answers.) Any request to keep in touch with KGans is only because if some more specific information may be needed on either of our parts to collaborate care for our children, I wish to do so privately and not put personal information out there for all to see on the internet. I would also like to be able to stay updated on the progress of KGan's daughter, as I'm sure they would like to stay updated on our daughter to receive valuable information and resolution of this problem.
I can't believe I am having to explain myself like this on here publicly for all to see, which is completely why I made the inquiry to KGans in the first place.
Again ggreg, thank you for your input. I will definetely check out the website and as an RN myself, I can assure you that I am staying "on top" of my daughters' symptoms. I also have watched some episodes of mystery diagnosis and believe I remember the little boy with the tilted neck and eye problem that you are referring to, and my daughter as of yet does not seem to have the same symptoms as him. Her MAIN symptom is just the strange eye movements with position changes. Other than that her eyes seem pretty normal. All of the other symptoms are minor, and I believe I have only noticed them because we have been concerned about her abnormal eye movements. If she were not having the positional eye movements, I would probably never thought anything of the other little things. We just watch her very carefully.
So sorry, I was just making sure I hadn't stepped on any toes. I posted back at the end of June, thinking of that TV program. They didn't think of the infant's eyes either. I know you are of course all over this thing with your child, and I do realize I got overly pushy about trying to get your daughter to the eye doc! I also misunderstood you wishing to direct message your friend, which I do misunderstand often, I was in a car accident and have cascading problems from it. Anyhow, enough from me! I appreciate you explaining things to me, and I am sincerely sorry you had to do that, as my only interest was to convey how similar both your children sounded to that kid in the TV program, and I just felt the solution was there. I wish you and K the best, and I know you all will find the solution for your children soon.
There is no need to apologize for posting here - this is a public forum, and the whole point of posting here was to get suggestions from people about this mysterious condition! Like Hanahana, I appreciate your trying to help our children. It is clear, however, that the symptoms you describe (and are in the video) are not the symptoms our children have, which is why our responses to your input perhaps lacked the enthusiasm you were hoping for. My daughter's head does not tilt - it is perfectly straight, except she prefers to turn it to the left when given a choice. Also, a permanent eye deficiency would cause a permanent tilt, while my daughter's symptoms disappear for weeks at a time.
In response to your question about when my eye doc appointment is, I would have to check the calendar, but it should be in the next few months - I was very pregnant with my daughter when last I was there, and she is 8 months old now. If there are any new developments, I will certainly post them here, so anyone in the future whose child has these symptoms will know what we found.
Guess I misinterpreted your descriptions of your child's head wanting to go to the left. And I posted a second time when I got no responses at all, thought you guys had missed it or something. The head position in the TV show began with an infant, and the eye symptom and even the head symptom were sort of hard to figure out, rather it was the problems from not seeing well that were noticed. The link appeared to be older kids. But I think I must be wrong, you guys know your own situation best, and I really should have just left it alone once I provided info in the first post. Sometimes my mind wanders and it comes out in posts. Sigh. All the best. And no need to 'splain to me no more, I'm gone, like I should have been after the first post. Oh, gosh, now I need to post about ME and my stuff! Haha! Smiles to you both!
My daughter had a 72-hour EEG, and the results came back normal. She did not have any episodes while hooked up, unfortunately. The neurologist gave me 3 possible diagnoses, all benign.
He stressed again that he did not think it was seizure related. He said that even though we did not get an episode on EEG, the fact that in 3 days there was no abnormal brain discharges of any kind is pretty conclusive in itself. So here’s what he had to say:
1) An abnormal Moro-type reflex, perhaps triggered by or exacerbated by a slight tonic neck issue. He said some babies inexplicably develop abnormal or overly-sensitive reflexes which disappear with maturity, as the higher functions of the brain take over from the brain stem. This is what he thinks is the most likely diagnosis. It does not really address the intermittent nature of the episodes, though.
2) A vestibular abnormality called paroxysmal torticollis, which is recurrent and usually intermittent. Most kids grow out of it, but it sometimes is the precursor to migraines later in life. This does address the intermittent nature of the episodes, but some of the information I found about it online does not quite match our girls – they speak of developmental delays in motor skills and history of family migraine. My daughetr was a little slow (but not enough to concern the doctors) to hold her head up and sit up, etc (although she’s actually ahead of her milestones now), but we have absolutely no history of migraine on either side of the family. Also, I am not sure if the tell-tale “head tilt” they talk about is the same as the pronounced “head turning” to one side that my daughter always had.
3) A physical vestibular abnormality in the ear tube, which creates an asymmetrical response to sound, causing dizziness. Because of the hearing impairment history with my husband, we are getting my daughter's hearing tested to check for something like this.
Those were the probable diagnoses. A formal hearing test (I think they called it a brain stem response test) should detect any abnormalities with #3. And #1 and #2 they should grow out of, but if it is #2 we’d have to watch for migraines in the future.
hi all, ive just red quickly through your posts. My daughter is 3 months old now but ever since she was 4 weeks old, i noticed her having episodes. at first i thought she just had a bad temper but gradually as time went on the episodes were increasing and i considered the prospect of epilepsy ( i have a 5 year old with this but it stems from problems she had with her brain while i was pregnant). i took her to the doctors who refererd her to a consultant, who tried to pass it off as colic, although my daughter does not cry a lot which i thought was a main sign of colic. given my other daughters epilepsy they have sent for her to have an ultrsound on her head in 2 days time.
My daughter is developing normally for her age but she has these episodes most days, sometimes 5 to 6 times a day. To descride these episodes, first i feel her body tense, she brings her arms and legs up, fists clenched eitherside of her face. her eyes focus up to the left, she holds her breath an goes red in the face. she holds that position for a few seconds before sometimes crying out. Now the reason i wanted to post on here is because i mentioned to my dad today that she seems to do it whenever i have her perched on my hip facing outwards, especially when going down the stairs. an he mentioned vertigo, she never has episodes wen lying down. as time goes on i seem to pick up on more of wat she's doing so i tested it out, walking down the stairs with her on my hip an straight away she did it. i waited til she stopped an then held her by her sides an lifted her in the air, as soon as she was up there she did it again. now im wondering if it is epilepsy and that this vertigo is a trigger, im not sure. will have to explain it to her consultant and hope he dont try to fob me off with another colic explanation. any advice would be appreciated
I'm no expert, but I would bring the above list of possible explanations to your consultant. #2 may be especially relevant, given your other child's history. I would also insist on seeing a neurologist, given your other child's history.
One thing I have been told (I am not 100% certain it is correct) is that epileptic seizures CANNOT be induced. In other words, if you can make the episodes happen on command, it probably is not a seizure. But I would confirm that with a doctor you trust.
Demand to see a neurologist, so they can rule out epilepsy. The only way to do that is to get an EEG. If you can make her have several episodes while hooked up to the EEG, they will know for certain if it is epilepsy or not.
Hi, I am just finding your posts. My daughter is 3.5 months old and has been having episodes like this since she was 3 weeks old. I am an audiologist and I test and treat BPPV so my initial reaction to my baby's episodes was that she had BPPV, although hers is just an upbeat nystagmus and lack the rotary movement most often associated with BPPV. I was just wondering if either of you found any answers since your last posts? We are about to start with the never ending appointments to try to get to the bottom of it. Unfortunatley I have a feeling that we won't get the answers we are looking for :(
I do not know if know this, but the EEG is not the only test to look for seizure activity. Also ask for a MEG. Here is good website that gives information about a MEG and why both are needed when looking for seizure activity:
Hi - Sounds familiar! And did you notice they're all girls that seem to have this problem? Including 2 who I met offline.
Well, the good news is that my daughter and Hanahana's daughter seemed to grow out of these episodes when they become independently mobile. Hopefully yours will do the same.
I did get my daughter tested by an audiologist, and she did not do as well as they would have liked, so they scheduled an S-ABR (sedated audio brain response) test. She had the test earlier this month, and it ended up shedding a lot of light on her condition.
Her left ear was perfect, but her right showed some hearing loss. Her hearing loss is mild to moderate. Mild in the lower frequencies, moderate in the higher. The audiologist said that was the most common type of loss. She said it was definitely an inner ear problem.
The good thing about my daughter's problem is that it pretty much puts an end to wondering what those episodes were. The audiologist said that a vestibular problem was almost certainly the cause of her episodes. She said the fact that the episodes went away when my daughter got independently mobile (rolling and creeping) is proof. She said we humans have 3 inputs for balance - visual, vestibular and somatic sensory (also known as somatosensory or proprioception). Somatic is basically your muscles telling you where you are in space. Before my daughter was mobile, she only had 2 inputs - eyes and ears - and the ear had a problem, so when it didn't match the eyes, she'd get vertigo. But once she had muscle input, too, her brain could compensate for the faulty vestibular input.
So I would ask for a full hearing evaluation and, if indicated, an S-ABR. If your child is under 20 pounds they can sedate orally, not needing an IV or needles. I want to say that if we had not been looking for the reasons behind these episodes, I would never have thought my daughter had hearing loss. She never acted in any way to indicate that. So it is possible that your daughter seems normal but still has some problem.
I also want to stress that even though this answers my daughter's episode questions, it may NOT be the answer to your child's, so please do not assume it is. Get her tested to be sure, because if it is not vestibular it could be something more serious.
And, achilles2, thank you for the input about the MEG scans. It's always good to know what your options are!
I hope this was helpful, and feel free to contact me with more questions if I haven't answered something fully enough.
My 3 months old daughter has a same problem (first time she was 5 weeks). Every 3rd week - 4 days - 10-40 times in a day.
We had lot of negative test (EEG, Blood, etc.), but we would like to know how can we help for our child and what can we expect.
I would be very grateful, if you write me your story, experience, test result, all information and case history.
Please find here my e-mail address: ***@****
My daughter was born on 10/28/2010. On 12/4/2010, when she was five weeks old, we noticed her first episode of vertical nystagmus and exaggerated moro reflex with position change. The episodes typically occur for four days in a row and then she will have a “break” in-between episodes of about three weeks. The episodes seem to taper off on the fourth day. On the first two days of an “episode period” she has vertical nystagmus and a scared face with turning over and lying down about 20 to 30 times a day. Each episode seems to last about 5 to 10 seconds. On the third day she tends to have 10 to 20 episodes of eye ball rolling and blinking and on the fourth day it seems to be even less than the day before. After this time we usually have an “episode free” time of about three weeks.
The episodes have gotten better (weaker and less severe) as she has gotten older (she is now almost four months old. She sometimes cry out (a scared cry) during and after an episode, but she now smiles, as we have given her a lot of encouragement and love during and after each episode. We have also learned that we can “prevent” some episodes by laying her down slowly and gently. Her episodes only occur with position changes, such as laying her down, picking her up, or turning her over.
My wife had a normal pregnancy with no concerns or health issues. We live a healthy lifestyle and all ultrasounds were normal. My daughter has been to see many specialists and had many tests.
The first neurologist concluded that she did not have a well-developed balance system in her ear and said she will grow out of these episodes. He also said that she had an underdeveloped nervous system and will grow out of that also. He stated it is the migraine equivalent in babies without typical migraines.
The second neurologist said that our baby is healthy and has a sensitive Nervus VIII neuronic path. He said when she is older than six months she will grow out of the episodes. Later on she may not like to travel in the back seat of the car or ride backwards on a bus or train. He said the periodic nature of the episodes (every 3 weeks) shows that our baby could have migraines later in life (my wife has a history of migraines as well).
Our baby was also tested by 10 pediatricians who all said our baby was normal. She had three brain ultrasounds and two ultrasounds of her body. The findings were normal. She had an EEG and the results of that were normal. All blood work and urine tests and eye exams have been normal also.
My daughter seems to be developing normally while meeting all of her developmental milestones. She does not like to lay on her stomach, but is healthy and thriving other than these strange episodes that occur. We feel confident as other parents have concluded that these episodes are related to vertigo and an immature nervous system and that she will grow out of them as a few other babies upon getting older and more mobile.
Thank you for adding your information to this list! It sounds like you and the doctors have made the correct conclusion.
I would encourage you to get your daughter's hearing tested by experts, however. My daughter's ear balance problems also included hearing loss. My daughter does not act like she cannot hear, so we did not know she had deafness in one ear.
If your daughter has some deafness, it is good to know early so you can help her adapt and get her help if she needs it. The tests are non-invasive and do not hurt her.
Hi, not sure if anyone will still be looking at this thread or not but worth posting since some of the symptoms posted seem to match my sons closely if I am reading the description correctly . He is 8 weeks old and is currently in hospital for an mri, eeg and ultrasound .
A video of an episode can be found below and would be interested to hear your thoughts. It is something that can be induced by laying him down or changing his position when he is lying down and vertigo seems to be the closest possible explanation for these symptoms if it turns out not to be seizures which initial examinations have suggested its not.
Hi! First of all, your son is adorable! What huge eyes!
I have to say that his video does not look like what I experienced with my daughter, although the eye flutter is indicative of vertigo. It also does not look like what I understand seizures look like, either.
If possible, when they sedate him for the mri, see if they can also do an S-ABR (sedated auditory brain stem response) test. It is administered by an audiologist. If this is vertigo, it stems from the inner ear, as my daughter's did. Her inner ear problem was finally diagnosed by an S-ABR test, which also revealed hearing loss in one ear. I would never have thought she had hearing issues, since she had one good ear and could obviously hear us.
See if they will add that to his tests for you.
And if your son is under 20 pounds, they can use an oral sedative that doesn't need IV or needles.
Good luck, and please let us know what the findings are!
Glad you found this forum. I hope it is of some help to those parents who are looking for answes. My husband and I both watched your son's video and the way your sons eyes "flutter" is almost exactly like some of the episodes my daughter had at your son's age. As soon as we would lay our daughter down as her head touched down the episode started and would usually last 5 to 10 seconds. These episodes would come in cycles about every 3 to 4 weeks. During these cycles she would have episodes for 2-4 days 2-3 times a day. Her eyelids would blink very fast and her eyeballs would twitch or do sort of a nystagmus. As she got older the episodes became milder and seemed to occur between longer intervals of "normalcy".
Another symptom we noticed in her that I have not heard from any other parents who have gone through this with their babies is that most of the time if she was not picked up slowly or gently (usually when someone picked her up under her arms) she would cry out a loud almost painul cry. The crying was equally as scary for us because it was a cry like she would do when she got shots.
The good news is she will be one years old this week and she has not had an episode or any other concerning symptoms since she was 4.5 months old. She seems to be developing normally and we hope this path continues. I am going to send you a private message on medhelp with my e-mail address. I have put together an anonymous "case study" that gives detailed info on each baby I am aware of with this strange condition. If you would like I will e-mail it to you.
Thanks very much both of you for your replies I really appreciate it at a time like this especially given you have both been through similar worries yourself. The good I suppose is that seizures/epilepsy seem to have been ruled out today after the EEG. It was borderline abnormal but they said that was ruled out at the moment .
They are taking bloods and urine and are investigating possible metabolic causes and also checking for neuroblastoma. They are also a little worried about head circumference (he was borderline 5th/10th percentile when born and is still 5th/10th percentile which should be ok but they have mentioned it as a concern ). An MRI is scheduled for Friday and we are due to see an opthalmologist then also , we have mentioned the possibility of an inner ear problem and depending on the outcome of Friday we may ask to discuss with an ENT doc.
Hanahana I would really appreciate that email and will email you shortly.
I know that this is an older thread but I am wondering if either of you are still checking it. My baby is doing the same thing and it is really scaring me. My son's doc. is out of town all week and I am so worried. Any help would be appreciated
Thank you to you both for posting this information and for all the updates! You both have been invaluable in helping us figure this out!
We have been experiencing this exact same situation since my daughter was about 2 months old. She is now 7 months and we haven't seen an episode in about a month or more.
Exact same symptoms: Disconnected look on face with position changes and approximately 7 times we've seen both side to side and up and down nystagmus (not exact on the clinical words for that). She primarily looks left when it happens.
Here is our current situation.
We have seen an ophthalmologist, an ENT, a geneticist, a movement specialist, and currently have an EEG and MRI scheduled for mid May. Everything thus far, as far as we know, has come back normal. However the geneticists and movement specialist don't believe it could be BPPV because they haven't seen it in babies and our daughter seems not bothered by the episodes.
My best friend's sister is an audiologist and has been convinced since day one that it is BPPV. She thinks that with the trauma of birth the crystals in her ear got dislodged and are causing this. In my heart I have to believe that this is it. She is an extremely happy, thriving little girl meeting her milestones.
Here are my questions to you both:
1) Do you feel the MRI's and EEG were worth doing? (We hate to do it but feel we should in case it is something more that can be treated now and avoided later.)
2) I am interested to hear the pregnancy/birth stories to see if there are any correlation between them and the BPPV. (I had a normal healthy pregnancy with sleep apnea towards the end that they were monitoring with non-stress tests. I was induced after being 11 days overdue and had a natural birth.)
I would never say NOT to do those tests, because I am not a doctor and would hate to have the docs miss something important.
However, it might be worth asking about the ABR audio test (your sister's friend will know all the details about this, plus everything I know is up on this forum). If your daughter has an inner ear issure, this test should find it. And if they find it, then you can discuss with your docs if the MRI and EEG are needed. It will also let you know if your daughter has any hearing loss issues you will need to address in the future.
If it's any consolation, both hanahana and I also met with doctor skepticism when we asked (repeatedly) if it could be a type of vertigo. It wasn't until all those others tests were exhausted and came back negative that they ordered the S-ABR and we found our answer - that it was indeed a form of vertigo.
Hanahana (who is a nurse) and I believe that this is perhaps not the textbook BPPV, but a form found babies that has not been well-documented in the past.
Hanahana has compiled a complete case study of all the infants we have met that have had these symptoms. If you contact her directly, she can send it to you.
Please speak to your doctor and ask for the S-ABR, preferably before the MRI & EEG. If they will not do it before, see if they can arrange to have it at the same time as the MRI. They will have to sedate the baby for the MRI, and perhaps they can also keep her sedated to do the ABR, rather than having to sedate her twice.
Glad we could be of some help to you. My daughter has been episode free since she was 4.5 months old. (She just turned one in March.) I was desparately searching for answers when we were going through this. Our doctors couldn't give us much information and didn't seem to know what was going on, so I turned to the web and found KGans post on medhelp. Conversations and collaborations on the forum were the biggest help in pushing forward with tests and info regarding what we believe to have been a form of infant vertigo in our daughter.
KGans answered you very well and I too can't "discourage" you to do further testing if you feel it is necessary. All I can say is we were the ones who pushed for our daughter to have an EEG and MRI to rule out seizures or a brain tumor. Our doctors did not feel either were necessary really, but respected our wishes to have the testing done. Because they didn't give me any answers I have to be honest and say I didn't fully trust them and didn't want to take any chances. They kept telling me what she was doing some "wierd baby thing" and she would grow out of it. It turns out they were right about the growing out of it part, and if we had just waited the testing may not have been necessary. The EEG and MRI were normal, and I was so thankful in those moments to have the peace of mind. I knew what was going on was something more than just some wierd baby thing and when it is your baby it is different!
Some info on how she and us as the parents handled the actual EEG and MRI tests.... She was very young when both were performed (1-2 months), and they were both pretty traumatic for her to be honest. During the EEG she had to be sleep deprived and have nothing by mouth for 8 hrs prior to. I think that is self explanatory as to how emotional that was. With the MRI, the neurologist wanted contrast through the IV to see possible vascular causes (migraine potential) and they had to stick her 6-7 times before they got an actual IV.... I had to help them hold her down, and even as a nurse it was so emotional for me, I almost threw up. I was so upset they were hurting her so badly. But after the tests were over all was well again and all of that is a distant memory. We still have the peace of mind to this day, so I think the decision is up to you. I think if you do or don't have the tests it may be the right decision. We have not seen an audiologist or had any hearing tests performef, but if you have concerns in that area, I would encouragr you to do so.
My pregnancy and delivery were pretty much 100% normal. S is my second daughter. The only difference in her and my first daughter's pregnancy was that my first daughter moved A LOT during my pregnancy... she was SOOOO active! S hardly moved at all. If I had gone by the baby book on how many movements I was supposed to feel, I would have been at the OB/GYN every day for lack of movement. She was born 10 days early with meconium stained amniotic fluid. She never had any problems related to the meconium, and you should see how active she is now as a one year old! (Hardly the same baby.) She started having episodes at 8 days old and the episodes ended when she became more mobile (rolling around a lot) at 4.5 months old.
If you would like to send me a private message on medhlep.com with your e-mail address, I would be happy to send you the compiled info on all of the babies I know about with these episodes.
Just to add, my experience with the EEGs and MRI were very different. My daughter had 3 EEGs - one that was for an hour, one that was for 2 days at home, and one that was for 3 days in the hospital with video monitoring 24/7. I did not need to deprive her of sleep or make her fast in any way, for any of them.
The MRI did not need contrast, so an IV was unnecessary. If your child is under 20 pounds and does not need contrast, they can use an oral sedative, which they did for my daughter. It was a breeze. I did have to make her fast prior to that, but only overnight, and she could have water or apple juice until 2 hours prior to the test.
Thanks again for the help and quick responses. I will keep you both posted on the results of the EEG and MRI.
KGans-thanks for the heads up on the S-ABR test. My audiologist friend said that the S-ABR is only a test of hearing and does nothing for balance. She said that it traces the pathway of the auditory nerve from the ear up to the brainstem so since my daughter passed her hearing test at birth and at the ENT, there should be no concerns with hearing loss. It's interesting that you found out more from the S-ABR test regarding the vertigo. I wonder if I am/she is missing something? Thanks also for the info about sedation. She is only 16lbs so she might make the cut off for the oral sedation. I'll definitely ask about it.
Once again I give you both a virtual hug and thank you for the current peace of mind. I know my family isn't out of the woods yet but this information is so helpful.
Your audiologist friend is, of course, correct - the S-ABR is not a balance test. Our children are all too young to be given a proper balance test. The S-ABR test was strictly to test hearing, but the results (coupled with the negative results of all the other tests) allowed them to infer the vertigo.
I would like to mention that my daughter also passed her newborn hearing test. She also showed NO signs of hearing loss in her daily life - I never would have guessed she had a problem without this test. Because she has one perfectly normal ear, she did not display any signs of hearing issues.
Along with the negative EEGs and MRI, the S-ABR allowed them to infer the vertigo because:
1) Her hearing loss is because of a faulty inner ear. A faulty inner ear is also the cause of vertigo.
2) Her vertigo symptoms disappeared after she became independently mobile. Our audiologist said we humans have 3 inputs for balance - visual, vestibular and somatic sensory (also known as somatosensory or proprioception). Somatic is basically your muscles telling you where you are in space. Before my daughter was mobile, she only had 2 inputs - eyes and ears - and the ear had a problem, so when it didn't match the eyes, she'd get vertigo. But once she had muscle input, too, her brain could compensate for the faulty vestibular input.
Hanahana's daughter's symptoms also disappeared when she became mobile.
MRI of brain and spine was scheduled this past Tues. It was a long process and traumatic like you mentioned hanahana. Results came back a few hours later with a nurse calling and stating, "The brain looks normal but we see a mass near the spine that we want to look at further." After a sleepless night and many, many tears, we went to the neurologist who ordered the MRI on Wed. a.m. to review things. They suggested another MRI to focus on that area and MRI number two was completed yesterday. Results came back last night stating that it is the thymus gland which is always that size in babies. Then the tears of joy came. We were so relieved. So everything came back normal.
The EEG was cancelled at this point and they are not looking to reschedule but will verify that in the next few days.
So we are chalking it up to BPPV as well. Thanks again for all your help and support and I'll keep you posted an any other developments.
We have also observed the same kind of eyelid fluttering. My kid has just stepped into 5th month. From yesterday, he has done it thrice (Once yesternight while playing with his mom,early morning today once he woke up and today late morning after getting breast fed). He suddenly starts fluttering his eyelids while his body is still. This lasts for 5-10 seconds and then he becomes normal. However, after this activity he becomes quiet and does not make much movements for few minutes. My wife and me are really worried and would like to know if this has been experienced by anyone before ? If yes, what is the cause ? Is is serious ?
Please take your child to your pediatrcian and ask to see a neurologist. I am not a medical person, but because your child remains very quiet and still after having a fluttering episode makes me think it might be an infant siezure. Often after people (of any age) have siezures, they remain still and quiet for a while afterwards, so they can recover from it.
None of the infants with vertigo had that still period after the fluttering - they all returned to normal activity immediately.
Infant siezures can be caused by many things, some more serious than others, so please see your doctor right away and get to see a neurologist. They will be able to tell for certain what is happening.
Thanks for your valuable inputs. I guess I exaggerated that "Minutes" part in my last comment. It actually lasts for few seconds. He then starts playing normally and behaves as if nothing happened. Infact he usually smiles after that !
I checked with my pediatrician (and also checked with my cousin who is a practicing MD). They say that it may be because of the cold. He had given some medication yesterday to cure the cold. While it might be curing my kid's cold, he has started sweating a lot now (Which my cousin says is a good sign that he is recovering from cold !).
But I am not sure if this activity is related to cold. Today, my wife called me up (while i was in office) and said that he did that again twice in a span of 15 minutes. When I again consulted to my cousin, he said that we should give some time for the medicines to affect. What he said as a general thumb rule is that "If the kid is playing, having milk properly and behaving like a normal kid with hand,leg, body movements there should not be any issue"... which sounds soothing but still keeps that doubt lingering in my mind. My wife and me are really scared and are just keeping our fingers crossed that everything will end up fine.
Any inputs on this front will help immensely. I am a hyper-tension patient and my breathing starts getting effected by these kind of instances :-(
Anyways, just to re-iterate my son's actions on this whole thing:
1. His eyelids start fluttering for 5-15 seconds.
2. His body is still for this period
3. Lately, he started making sound which generally is heard if there is a bad-chest infection when someone catches cold.
4. He returns to normalcy in next 10-20 seconds.
5. All other activities are (Thank God !!!) normal.
6. He has been facing this since last 2 days.
That sounds more like what we experienced. I will stress though that if he does have ANY stillness AFTER the eye-fluttering, you must push your doctor to see a neurologist.
The strange sound may just be from his cold, as the doctors think, if it just started recently.
Yes, it is very scary to see these episodes, even when all the doctors tell you there is nothing seriously wrong. All of our children's episodes were intermittent - they would happen frequently for about 4-5 days, then suddenly stop for about a month, then start again for another 4-5 days. See if they stop in the next few days. If they do, then see if they begin again in 3 weeks to a month or so.
Also, all of our children started these episodes in the first few weeks of their life - yours is a late starter. It could be from the illness, if he has fluid in his ears. The fluid could make him dizzy (vertigo) when he changes position. See if the episodes stop when his cold passes.
Hopefully your doctors are correct and it is the cold causing his symptoms!
My life has been BUSY this summer and I haven't had a lot of time to check in with everyone. I have thought about all of your babies many times and wondered how everyone was doing. I do not have the time to e-mail everyone induvidually, so if you have the time, would you mind posting some updates on any new test results, symptoms, recoveries, etc. Or if you would rather do so privately, feel free to send me a private message through medhelp.com. I am hoping to hear that maybe some of your children have grown out of this "infant vertigo" just as my daughter did. She is 16 months old and is so healthy and thriving. Please let me know how things are going. I would love to hear some good news!
Thanks for checking in. My little girl is almost a year now and is also a very happy, thriving little one, praise God. We have not seen an episode since she was about 4/5 months old.
Last week we had a follow up appointment with genetics and they said that she was "perfect" and they discharged her. We have one more follow up with neurology in Sept. but I expect the same results as genetics.
Thanks again for these posts and all the support and hope it brought to us.
I have a 3.5 month old nephew whose eyes flutter rapidly for about 5 seconds when put in a horizontal position. It doesn't happen all of the time, however it is pretty worrisome when one witnesses it. It appears to be seizure-like, however, the two different pediatric neurologists that have seen him don't think it is seizures. He already underwent a 24-hour EEG and it came back fine. Also, the MRI came back clear as well. We are all so worried. My nephew had an appointment with the pediatric ophthalmologist today and the doctor said that it is not nystagmus and that his eyes are normal. Have any of you experienced this with your baby? If so, please share any treatments that your baby had. I would also like to know when and if it stopped. Any information or direction you can provide will be greatly appreciated. I look forward to your response.
Our baby had same. Doctors find nothing.
I am sure is it is a vertigo/dizziness "only". When you put him horizontal he will be dizzy for a few second...
Our baby outgrown when she was 9 months old and she started to rolling, creep etc. - when developed her balancing system.
Interesting: our baby had it every third week for 4 days, later only the fourth week for 3 days last 2 months we saw it only 1 times and gone.
Our baby beautiful and healthy :)
Please note: if you see the episode be calm and smile. If you be scared, your baby is be frightened to. If you smiling your baby think it is a fun and will enjoy it. Our baby enjoyed it in the last time. If she had not got episode she waved her head to start the dizzy and she smiled and enjoyed it when her had the nystagmus...
It certainly sounds like what our children had. Like yours, my daughter would have eye flutter when put down for a diaper change - but not all the time. Like the other person above, it seemed to happen for a few days every month, go away, then come back. Also like the other person, as she started to moved independently, the episodes became shorter and eventually vanished.
My daughter is healthy and happy, too!
I do suggest getting an ear doctor to check your child, as my daughter has mild hearing loss in one ear. This bad ear also has an abnormally shaped vestibular aqueduct, which may have contributed to her infant vertigo.
It is great that the EEG and MRI were clear (as were ours). As long as the eye fluttering not followed by a period where the baby seems lethargic or otherwise confused, then it likely is not a seizure. Keep watching your nephew and make sure no new symptoms come up or that it doesn't get worse.
If it is what our children had, it will happen less and less the more mobile your nephew gets. I know it is hard not to be concerned when you see it happen, but it does not seem to be a serious condition. My daughter is now almost 3, and she has no vertigo now - she loves the merry-go-round and swings!
Good luck and let us know if you find anything out!
Thank you very much for your response! I am so happy to hear that your babies are doing great! Your experience with this certainly keeps us optimistic. I will definitely post an update to inform you of my nephew's progress. He hasn't had an episode in the past week. He is such a cute and happy baby! This Friday he has another EEG scheduled. We shall see what the doctor says, but I have a feeling that it will come out clear like last time. We are praying that these episodes go away like your babies. Thanks again!!
My son is 13 months old and he walks around with his ear on his shoulder and he keeps doing it and I don't know what to do. I called his doctor and they said they will check for an ear infection but that did that before and said he did not have one.
This does not sound like what our children had. It sounds much more like a condition called torticollis, where the head tilts or twists to one side. Please click the link below for all the details and to see if your child has more of the symptoms they list. It is not a dangerous condition and is usually easily remedied. I hope you find the cause - good luck!
Thank you so much for all this info you have posted! My 10 week old started doing the exact same thing as you are describing. She started doing this at two weeks, and it appears for three to four days about every 2-3 weeks. I just went to the nurologist and we are scheduled for the 24 hour EEG as well as an MRI. The dr. Seemed mystified and stumped. Luckily she was going through one of her phases where she had the events so the nurologist got to see it happen and she recorded it. When she goes through these spells it seems like every time i lay her back down she does the eye flutter and freezes then comes back. Could you please send me any info you have so i can share this with her pediatrician. She is very intrested in learning what this might be. My email is stephaniehale.***@****. I want to talk to her about the possibilityof it being something ear related as it seems to be what explained the incidents happening with your daughter. I feel a lot better after reading this and it gives me hope that there is a solution. Thank you so very much!
Hi Kgans & hanahana
I feel as though your original post describe exactly my daughter other than the eye sluttering episodes, though I wonder if she had some of these earlier on when she was much younger.
She too prefer to lie with her head on the left when on her back, but rakes toys in with her right first when on her tummy. When upright on my hip (she is 4.5months) she is steady on my right hip but loses balance when on my left.
I have been SO worried about Cerebral palsy with the side preference and assymetry - but some of the fact don;t seem to fit and other than the absense of eye fluttering this sounds exactly what you are describing and so I wonder about ear or balance problems. Her left pupil is sometimes smaller at times than her right too
How is your LO doing now?
We are booked in to see a nuerologist in July as she has central sleep apnea as well which further worries me about something neurological but they are telling me this is something she will grow out of at this stage. Nothing to believe it is anything more than that...
My LO is now 4.5 years old! She is perfectly fine, no more incidences with vertigo. The older she got, and the more she could move around on her own, the less episodes she had. And even though she was VERY left-sided preferenced as an infant, she writes and draws right-handed now (which surprised me). But she still throws and does puzzles and such left-handed.
Your neurologist should be able to do some EEGs and definitively tell if there is any neurological issue. We did a 3-day in-hospital EEG study which cleared her of the possibility of seizure. That's when we went to the ENT (Ear Nose Throat) and found out she is virtually deaf in one ear and had a malformed inner ear which was causing the dizzy spells. I suggest seeing an ENT to rule out ear issues. My daughter passed the newborn hearing screening perfectly, yet was almost deaf in one ear. The screening is not foolproof.
Thank you so much for getting back to me!!
Its so good to hear that the left handedness was something she basically grew out of - She can easily use both but often chooses her left. She also only puts her left foot in her mouth which is strange. She grabs both feet, but only suck on her left foot :) and she loves to face left most of the time - unless the tv or her sister is on the right side which is much more interesting, then she will turn to look!
We see a private neurologist next Friday and then a public hospital appointment two weeks later. She had a normal eeg at 3 weeks old but they are doing another one
I often feel as though its her balance thats playing a role in all of this, when she is on her back or tummy (no way of feeling off balance) she seems perfectly happy and normal, but gets very edgy and wobbly and frustrated when upright
she passed the newborn hearing test as well - I think I will def ask the neurologist about an ENT
Thank you, I feel reassured! so glad all is well with your little one!
Was it "Benign Paroxysmal Torticollis of Infancy"?? This is NOT regular muscular torticollis, this is different!!! My daughter has this. You and hanahana could have described my daughter and our situation *perfectly*. It is a form of infant vertigo and is a migraine variant. Her episodes started at 4 weeks old. They occur every 2 weeks like clockwork and her head will tilt (sometimes severe and obvious, sometimes very, very mild and almost not noticeable) alternating both left and right sides (resuming totally back to normal and straight while not in an episode) and she has the eye fluttering/blinking/rolling back upon movement (picking up and laying down). In between episodes she is normal. We feared seizures for so long, and like you did multiple EEGs and MRI (normal). We now have a BPT diagnosis. Benign Paroxysmal Torticollis of Infancy. They outgrow it anywhere between 1-5 years old (usually around 2-3). My daughter is 8 months. Please let me know how your children are doing. Thank you!!!!
Was it "Benign Paroxysmal Torticollis of Infancy"?? This is NOT regular muscular torticollis, this is different!!! My daughter has this. You and KGans could have described my daughter and our situation perfectly. It is a form of infant vertigo and is a migraine variant. It occurs during infancy and is basically similar to an infant form of "benign paroxysmal vertigo of childhood". My daughter's episodes started at 4 weeks old. They occur every 2 weeks like clockwork (like you both said about the pattern being predictable) and her head will tilt (sometimes severe and obvious, sometimes very, very mild and almost not noticeable) alternating both left and right sides, resuming totally back to normal and straight while not in an episode, (I noticed you both wrote about noticing maybe their head would seem floppy or tilted or they would snap it down to the shoulder during an episode) and she has the eye fluttering/blinking/rolling back upon movement (picking up and laying down). I can induce the episodes with movement and can calm and settle her during them in a dark, quiet room. In between episodes she is normal. We feared seizures for so long and like you did multiple EEGs and MRI (normal) and all sorts of bloodwork both metabolic and genetic (normal). We now have a BPT diagnosis. They outgrow it anywhere between 1-5 years old (usually around 2-3). My daughter is 8 months. Please let me know how your children are doing. Thank you!! I can't believe how similar all these stories are of babies who have BPT (there is a great Facebook page). I hope your children have grown out of it- please let me know how they are!
By the way, our pediatric neurologists took a long time to diagnosis this as it is a rare (but benign) condition most doctors are unfamiliar with. That is why it takes all of us families with children affected by this so long to get a diagnosis and it feels so confusing and worrisome. Also they like to rule out a lot of things. We worried about it being seizures for so long yet we were baffled because tests (EEGs) kept coming back normal or non-specific. They thought some videos of her episodes "could possibly look epileptic" but thought most of them "did not look epileptic" so they were really baffled for months! Our neurologists had to really research this condition but we now have the official diagnosis. Again, I am amazed at how similar all our stories are.
And by the way, prognosis is great with BPT. I was told there may be some mild gross motor delays early on, but overall they do great! I am just curious to see if you think this is what your children had and if they are all better. Also I think I read something about inner-ear problem, there are many people on the Facebook group for BPT who have said their child has had some inner-ear problems. Ok, that's all. Thanks!
Wow, that does sound like our situations! What baffled my doctors all the time was that her symptoms would go away and then come back. Like you, it was like clockwork--although mine was closer to a month apart, and lasted about a week, then vanished. I wonder if my daughter did have BPT. She is almost 5 now, and grew out her symptoms by the time she could walk (about 10-12 months). She has never presented with any notable motor skill delays, and is very intelligent. So if this is what she (and all our kids) had, thankfully it seems to have not had any lasting effects. My gal is doing great!
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