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]

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.

[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

[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

[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]

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

[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