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

[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.