Tilted head and shaking head in 9 month old baby

[tazdaz]

Hello,
My 9 month daughter has had a tilted head intermittently for the past 1 1/2 months.  It has always been to the right and seems to last for a week and then goes back to normal.  She is on her 3rd time of having it tilted.  When she is reaching forward it seems to straighten up but when she is sitting or on her tummy, it is tilted.

She also shakes her head side to side like "no" when she is tired, excited or done eating.  Not always but she would shake it anywhere from a couple times a day to 10ish if really tired.

A month ago to I noticed her dropping her head forward.  I had a video and showed this to the paeditrician and she has booked me in for an EEG.  It is hard to tell if she looks "out of it" after dropping her head.  She doesn't kick her legs out or arms out when this happened so it does not look like an infantile spasm.  I was concentrating more on her shaking head and tilted head so did not notice if this occurred more than the once but I do know it has not occured the past few weeks since I've been watching for it.  

We have been going to physio for the head tilt but she does not see it as a muscular problem.  I just took her in today when it was actually tilted.  She is recommending we see an opthamologist.

Just wondering what these symptoms could be and if they are related?
Thanks for any help
Tammy

[tazdaz]

Hi everyone, I just received a message from Bebe6268.  I have not been on this site for years but his message to me came through.  I am happy to say my daughter is now turning 8 years old and there have been no other issues relating to the issue she experienced when she was a baby.  She is a normally developing girl physically, mentally and academically.  Thank you everyone for the information and support I received over the years and hope that this message provides some relief for those that are experiencing problems.  I do believe from my hours of researching the internet that it can be caused by many different things but can also be normal so I would still take all steps to have it investigated.  Good luck and good health to everyone.  
  

[andg]

I was wondering whether this head tilt phenomenon is related to the DOMINANCE of Right Internal Jugular Veins in these kids so that these kids are improving their Cerebral Venous Drainage by intermittently tilting their heads to left sides so as to maintain good and improved Cerebral Venous Drainage of their Rapidly Developing Brains through the Dominant Right Internal Jugular Veins. I do not know for sure how many percentages of kids have Co-Dominant Internal Jugular Veins Or Dominant Right Internal Jugular Vein or Dominant Left Internal Jugular Vein. I also do not know for sure whether there has been any research studies performed to actually correlate the association of the Dominance of One Internal Jugular Vein and Head Tilt Tic in the kids. However, if your neurologist thinks that it is worth investigating, they can actually measure with simple ultrasound (almost at no costs, no sedation or no pain to the kids) the diameters of the both Internal Jugular Veins to see if this may be the underlying cause of the head tilt.  

[xaviistarr]

My son is also 5 months old, and he didnt do a lot of tummy time when he was 1-3 months... he hated it. But now he bobs his head as in a nod motion, and at first sight he just seems very excited. He kicks his legs arms, screams, and smiles. Eyes look just fine too. The right side of his head is flat because thats how he was most comfortable to sleep. I dont know if that has anything to do with his apparent lack of balance of his head. Doctor said 20 mins of tummy time, daily. He is scheduled for an Xray to rule out craniosynostois. Any advice or comments are appreciated.

[Edensauntie]

My niece is 9 mos old and is experiencing the head bobs as well. Instead of the "no" head shaking episode, she bobs her head up and down as if saying "yes." My sister is taking her to the doctor, which after reading all of these posts, seems to be the first of many, many steps. The very first time I had witnessed the head bobbing episode is when we were out for lunch and she was in her high chair concentrating on the table. All of a sudden, she bobbed her head up and down a couple times and almost hit her forehead on the table. She wasn't crying or acting strangely, but it still spooked us a little bit. It is rather interesting to me that a lot of these posts talk about a head tilt. In my niece's earlier months, she did experience as well, a head tilt. It has since been corrected, but it just seems strange to me how all of these cases are correlated in some way with a head tilt, a head bob, and the babies all seem to be in the same general vicinity of age. I wonder if that just proves that what these babies are experiencing, is somewhat normal with development? I don't know, but it certainly would be less worrying.

[Intuitive]

My baby girl is 7 and a half months.  She has been shaking her head from side to side "no" for at least 1 month.  I have been so scared and worried about something being wrong with her.  My gut tells me that something isn't right.  I asked her doc and he stated that it was all just play and stimulation.  I notice that she does it more then 10 times a day.  She does it when she is happy, bored, sleepy, or just because.  She has no set mood that she does that in.  I have video of it as well.

The thing that gets me as well is that since she was a month old, we noticed that her head tilted alot.  My mother noticed it right away before anyone.  When she was born, her head was so weak that we really couldn't tell if she had a tilted head issue at all, but I did notice that she was different then the rest of my kids.  I have 4 all together and she is my last.  The first 3 were all very strong and advanced for their ages.  My 3rd child born only a yr before my babygirl with the shaking problem, held his head straight up right after he was born.  
Anyhow, the other concern I have is that she is going on 8 months and she gets on all fours, attempts to push herself up to a sitting position from being on all fours, but she can't even sit up yet at all.  She seems really weak and unable to hold herself up to sit at all.  I feel that she is definately weak and with her head shaking and all it really worries me.  
For the record, you should also know that her head is not as badly tilted, but it still tilts.  I can see that her head is still not strong enough, although she does hold it up, it seems sort of weak and just bopples sometimes.

I really need some advice on this.  Please help.

[tazdaz]

I was worried about the sedation too but they did describe it as a mild sedative and we were only in the hospital for a couple hours.  I thought the procedure would at least have to be overnight.   I’m not aware of barbiturates that she was given.
We did have a complication though when she went through it.  When she was being admitted they took her temperature and she had a bit of one.  They first said with any temperature they would not do the MRI as there may be something brewing in her system.  She seemed perfectly well so they decided to check it again in ½ hour and it was normal.  Perhaps the thermometer was faulty??  Not sure, but they decided to do it.  They said the only risk was that if she does have a flu or cold brewing in her system it would be more likely to come out if we went ahead with the sedation.  But no other side effects besides that.  When she was waking up from the MRI she had a bit of trouble breathing so they ended up giving her a steroid called dexamethasone.  This is something they give babies sometimes when they have croup.  She recovered quite well and about ½ hour to hour after waking up we left the hospital.  
I can definitely understand your worrying.  I guess you have to weigh up between knowing what is wrong and perhaps getting help earlier than later or if its something the neurologist thinks will go away on its own perhaps wait and see.  Its a hard one I know.  Perhaps talk to the anaethesitist (sedation person) and they can give you more information.  You will definitely be speaking to someone at the hospital before the MRI so you can also ask all your questions then.
Sorry I couldn’t be of anymore help.  I’ll be thinking about you.
Good luck!  

[vickipet]

Hello ,
I have been following your progress of your daughter and happy things are working well.  My son who is now 9 mos. old started from 7 months shaking his head side to side (as if saying no) and it can happen while he is trying to stand, while he is sitting even while he is lying down trying to sleep.  I took videos of this and the neurologist prescirbed the eeg to rule out seizures and this was ruled out.  Now the next step is the MRI and i am very worried about the sedation.  Did your daughter have sedation and do you know what kind of barbituates?  I have heard stories of allergic reactions (rare ones) and  a child dying from the sedation.  My neurologist is saying there may be a blockage that the child is trying to shake loose...and has not given me any medical terms for this and I am worried about going through the MRI.  Do you have any recommendations? I appreciate your help so much!

[tazdaz]

Thanks everyone for all the information since I first posted this.  I thought to share the rest of my story and hope it may help some of you parents out there.  
The last post was middle of October.  My daughter went in for her MRI and all results came back normal.  There were also no neurological signs of any problems due to the fact she was premature which was great.  When we went back to the neurologist after all the tests were done and all normal (EEG, MRI, Opthamologist checking for nystagamus) he diagnosed her as having a mild form of spasmus nutans and said it should go away on its own within the next year.  I read that with spasmus nutans the symptom of nystagamus had to be present otherwise spasmus nutans was not possible.  He said that it is mild form of spasmus nutans so nystagamus does not need to be present.  She continued on with head tilts and shaking head side to side.  Then we travelled to Canada for holidays for Christmas around her first birthday.  She had a head tilt when we arrived for about a week that I noticed but others did not.  As the weeks went on, I never really noticed another head tilt.  A very slight tilt sometimes but nothing like it was for the past 5 months.  The shaking head “no” side to side also reduced and she would just do it every so often.  It seemed she would do it only when taking a drink of water and it seemed like a bit of a shake because she had a chill.  She’s now 14.5 months old and I can say she has not had a tilt for almost 2 months and I don’t even notice any head shaking “no” side to side.  So I’m hoping this is it for her and I won’t see it anymore.  Hopefully this gives some of you hope out there.  But looking back I am glad she had all the tests she did have although it put her through a bit so young in life.  But for me and for her it was worth it making sure nothing else was wrong in case we had to start any treatment.  I will keep checking this site every once and a while and update you if my daughter has any changes.  Wishing you and your little ones all the best!!

[SandEsmommy]

I found this post and am very interested.  My 10 month old daughter has been having a "tic" where she places her head on either shoulder and holds it for a few seconds. This happens several times a day, especially when she is tired.
Normal EEG, UGI to test for reflux (inconclusive with one instance of minor reflux), saw the neurologist who said that since her development is normal, he wouldn't worry.
Pediatrician put her on Prilosec to see if it is reflux (Sandifer's Syndrome) but it hasn't gone away. Not sure what to think.
We can schedule an MRI to rule out tumors or other brain abnormalities but Neurologist is confident it will be normal. So is it worth sedating her?  We're not sure.
There are a couple other reflux tests we can do (a one hour UGI or an inpatient 24 hour UGI) which we may do, but if the prilosec isn't working, not sure if it's worth it.
Any ideas?

[seansmommy]

You sound like you are where i was at 4 months ago. My son is now 9 months old.
After months of doctors, blood tests, MRIs - the neurologist finally diagnosed Benign Paroxysmal Torticollis (BPT). Neither my husband nor I have any history of migraines in our families. It used to be when he was littler that he would have the head tilt for up to 2 weeks, a week or so of straight, and then tilted again. Then it reliably began switching sides. Finally when he was around 7 months old (a week after starting daycare) he had what I can only describe as an attack. Only then did we see any of the associated symptoms such as vomiting and pallor. In retrospect there were 2 other occasions we attributed to either colic or stomach virus that might have been milder attacks of BPT.

It is worth noting that my son has also been shaking his head "no" when he's tired. The Neurologist didn't think this was significant. He also has mild hypotonia in his upper body and is at the slower end of the spectrum for reaching gross motor miles stones.I believe that these may be caused by the BPT as well. BPT doesn't seem to have much research done on it. Most websites have cited the same study done over 30 years ago. Anecdotal evidence I've been able to collect suggest that there may be a link between BPT and other sensory/neurological difficulties. While most articles claim children grow out of it by the time they are 5 I know of at least one girl who continued to have syptoms until she was almost ten. It's really quite a mystery.
Good Luck and I sincerely hope that everything works out for you.
-Christina

[crystalhanzelka]

has hydrocephalus been ruled out?

[kkwendt]

I have a 5 month old that does that head bob and jerking when we are working on sitting.  He is super strong everywhere and most of the time in sitting his head is straight up and he looks around, then every once in awhile his head bobs around or tilts to the side.  He smiles when he sees us and get excited.  
When I pull him into sitting there is no head lag.  On his belly he does not like it, (I did not really do tummy time for about 2 month) now he holds his head up but does not push up on his arms.
Is all this normal?
Yes please explain the jerking and bobbing you are refering to.
Kalynn

[graysonsmommy]

Just out of curiosity, how do you define the difference between normal infant strength learning at 6 months versus a true jerk/bob movement?  I don't think we have this happening for us, but sometimes when he is righting his head to look around from looking down, he sometimes sways slightly and then stabilizes himself.  It's not all the time, mainly when he doesn't feel well or is really tired and sucking his fingers which is his cue to be put to bed.  It's sort of like a slow motion tilt and then straighten up, not even really that much movement, it's so minimal it's hard to explain.  Definitely not a bobble or jerking movement.  When he lays on his belly, he holds his head completely still and upright.  I can't think of any other time we see movements like this.  So can you explain this bobble movement more?  Thanks

Jessica

[SuperO]

If your son is having jerking/bobbing episodes upon waking or when tired, I recommend you bring him to the ER.  I would tell them you think your son might have infantile spasms. They will get you hooked up with an eeg right away.

My son has infantile spasms. They were brought on when he was tired. He started by having bobbing/jerking episodes over the 4th of July. If your son is diagnosed with IS, it is extremely important that he gets treatment asap. These spasms cause brain damage. Most peditricians think it is reflux or nothing to serious to worry about because they don't looks that bad. It is important that you advocate for you child.

Better safe than sorry.

[RIVEEMI]

Hi Jessica,
I know what you mean - it's so frustrating to expect to have your questions answered at your long-awaited doctor appt, only to have them say "just watch him and bring him in if anything changes, otherwise, we'll see you in a month!" Gee thanks, right? Shoot, that's discouraging about the neurologist though. I, like you, expected to go in there and have all, or at least some, of our questions answered. My son actually didn't do the head bobbing/jerking more than a couple times this weekend, and definitley seemed to be only when tired. I'm really hoping it is just normal activity that he will soon grow out of. In my best case scenario, I'm hoping we'll see less & less of these bobs, or maybe they'll stop altogether, and we won't have to even take him in to get tested! Keep me posted on your situation, and I'll do the same!

Thanks,
Emilie

[Carol in PA]

Can you make a video of your baby doing the abnormal things.
This may be helpful in the future, if something else comes up, or it changes.

Wishing you the best,
Carol

[graysonsmommy]

I thought our visit to the neurologist would answer all of our questions, and after a two month wait to get in, I was disappointed when this miraculous appointment felt like all the rest.  He took a good look at our son's reaction to things, said he has good reflexes, very good eye contact, his development is on target, his pupil dilation differences called anisacoria (which I worried about until he was seen by an eye dr twice and the neurologist, THEN also noticed my husband and other son both have it!) is common in about 15% of the population and he didn't recommend further testing.  So here we sit....waiting.  I don't really know what I am waiting for, just that I feel like these "episodes" are unsettling.  I feel like I am waiting for a bomb to drop.  Every time he has a week of keeping his head straight, I think that maybe this time he won't revert, this time he will keep his head straight and never look back...so, when he tilts again, as to be expected of course, I feel the disappointment and fears all over again.  I feel like a yoyo and truly wish I felt like I could trust all of the doctors that keep telling me they think it's nothing serious.  The neurologist even point blank said to me, twice " I think this is nothing serious, enjoy your baby!" and sent us on our way with a follow-up appointment in February.

Jessica

[RIVEEMI]

Hi Jessica & Tazdaz--
I was intrigued by your posts as I am going through something similar with my 10-mo-old son. He doesn't have the head tilt, it's more of a head bob or nod. He'll jerk his head up & down a few times. He also seems to do it more when he's tired. I haven't seen his eyes move with it, and haven't noticed any other spasming in his limbs or jaw - just seems to be his head. We saw the pediatrician this week and she didn't really make a diagnosis one way or the other, but referred us to the neurologist. I've done a ton of googling and random sampling of other moms I know, and I few have gone through similar experiences, and all seem to think it's just normal activity, a phase that'll he eventually grow out of. It doesn't make the worrying any easier though, does it? I'm worrying about the really bad things - Tourette's, eplilepsy, brain tumors, and the thoughts of all these things really scare me. Our neurologist appt isn't until Jan 12th, so it's tough waiting it out in the mean time. I'm starting to think my worry is an over-reaction though. Yesterday he didn't bob his head much at all, and he really does seem to do it only when he's tired, so I really hope it's just a normal tic that will soon go away. Any advice/ideas either of you have would be appreciated. And I'll keep you updated on my son's situation!

[graysonsmommy]

Oh and I forgot to ask....why is it that if the head tilts to both sides that means nothing more serious is going on, IE - tumors?  I have been terrified of this possibility so I was highly intriegued by this comment.  So I was wondering who told you this and why?  Sorry, I forgot to mention it in my initial post.

Jessica

[graysonsmommy]

I keep hoping our tilt will be gone for good too.  Our son is 5 months old and his tilt switches sides, he goes for about 7-10 days straight and then tilts for another 6-8 days on average. It started on his right side and now it switches back and forth.  We have also checked the eyes, twice actually and everything looks good, we had x-rays and saw a neurologist who is reluctant to do any more invasive testing on such a young child who he says has a lot going for him.  He is developing normally in every other way.  

So I was just wondering, if you have had your follow up appointments and if anything else has shed light on your situation?  I can't find a single doctor who thinks we have anything serious going on and while that is encouraging, in the back of my mind, I can't seem to let go of the possibility that maybe they just don't have enough experience with these things.  While we don't have migraines in my family, we do have a family history of vertigo and I wonder if there is some connection with the BPT....

Jessica

[tazdaz]

Just to give you an update in case anyone else is looking up similar information...
We had an EEG and the results came back normal. Very relieved at that!!!!
She is still booked in for the MRI but the neurologist is quite sure that the results will be fine.

The other week she tilted her head to the left. It was not as severely tilted as the right and the amount of time it was tilted lasted only 5 days, then the more usual 7 days. The fact that it is tilted to the left also means even less likely that its anything structural (ie.tumour).

So where that leaves us...
Relieved that it is not something really nasty but confused on what is causing my little girl to hold her head tilted to one side or the other and many questions as to how long this will last, future repercussions... The neurologist said it could be a forme fruste (i think he called it - basically an "atypical") form of spasmus nutans. He also said it could be BPT (benign paroxysmal torticollis) however that is usually associated with migraines that runs in the family.

We are still booked in for a neuro opthamologist to check nystagamus but she does not appear to be moving her eyes side to side. If she does not have nystagamus I'm not sure if she can technically have spasmus nutans. Apparently I read that tilted head is caused by having nystagamus. So if my girl doesn't have nystagamus then why is she tilting her head?

And with BPT there are alot more symptoms that she doesn't seem to be having...thankfully!

So not sure what else it could be or if its one of those funny things babies just do. Tomorrow is day 8 of a right tilt she's been doing. I'm hoping it will be gone tomorrow ... for good.

[tazdaz]

Hello,
Just thought I'd update the forum on what's happening with my daughter.  We went to the neurologist and he believes its spasmus nutans.  Just been looking at the internet about this and seems it goes away on its own over time.  She is still booked in for an EEG to make sure no spasms and is going for an MRI to rule out any tumours but the doctor thinks those should all be clear.  We are also going to a neuro opthamologist to check her eyes.  She is not showing signs of Nystagmus (the eyes going back and forth), one of the usual symptoms of spasmus nutans so I want the opthamologist to confirm whether he sees any problems with her eyes.

I have some questions with regards to this if anyone is familiar with it.  Apparently it is quite a rare condition that I believe is not known about too much.  
1)  If she is not having nystagmus, will she still have spasmus nutans - will nystagmus come later?
2)  All the information on the internet says it goes away over time (few months to a few years).  Basically before age 6 or so.  Does anyone have experience with this and was this the actually case.  I read a posting about someone saying that is not true that it may not go away - there is just not enough research on it to know.    
3)  If the tilted head and shaking head side to side "no" goes away are there any long lasting effects?  I read that they could have more chance of developing some long term eye problems (strabinisus...- need to read more about these).  Are there any other lasting effects or is this an indication of other future problems to come?

I'm sure I'll have many more questions as I digest all this information.  I'm hoping it follows the route of going away in a few months of course.  Today her head tilt went away and she's holding it pretty much straight.  A week it lasted this time around, the same timeframe as the other 2 head tilts.  

Thanks so much for any information anyone has

[DrNoopurMD]

Hi,

Thanks for writing in.
An X ray or CT scan of the neck will help in diagnosing Torticollis which can be congenital or acquired.
Congenital torticollis is seen in infants with birth trauma or due to congenital shortening of neck muscles.
Acquired Torticollis can occur due to neck trauma which results in sliding of upper two neck vertebra tearing the neck ligaments. Other causes include tumors of base of skull, severe infections of posterior pharynx, ear infections and surgical removal of adenoids.
Seizures like you rightly mentioned salaam seizures can cause neck tilt.

[dawn320]

I don't know much about the head shaking thing , but i can tell you that my best friends daughter, when she was a baby done the head tilting thing all the time. Her grandmother who does massage, started massaging that muscle in her neck and by the time she was walking it had completely went away. Hers was pretty bad too, she done it all the time not just when she was tired. her head tiled to the right side and she would massage the muscle on the left side. I just wanted you to hear that. I know you are worried as any mother would be and by all means go have the tests done. I just wanted to tell you what i had seen. Her daughter is 12 years old now and you would never even be able to tell that she had done that as a baby. i will be praying for you, your daughter, and your family.