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.
Don't know what the asterisks are about in the last post. It should read "*****", as in s-u-c-k-s.
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.
Keep in touch!
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!
KGans- I typed the previous post in a hurry trying to get out the door! I apologize about the typos! I'm sure you will catch them.
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.
Googling, I found this condition: Benign Paroxysmal Vertigo of Childhood. Sounds interesting to discuss with our neuros.
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.