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]

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!