Discussions By Condition: Infant conditions

Head shaking "no" & head tilt - 9 month old

Posted In: Infant conditions 13 Replies
  • Posted By: Anonymous
  • September 26, 2008
  • 00:17 PM

I was just wondering if anyone has any experience with this and could share any information at all. We're in the middle of attending different appointments to figure out what is wrong with my little girl but I'm trying to find out as much information as I can at the same time.

My 9 month old 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 just finished on her 3rd time of having it tilted. When she is reaching forward it seems to straighten up but I think that is because her arms are reaching out forcing her head up. When she is sitting or on her tummy, it is tilted. It does not tilt to the left.

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 month since I've been watching for it so that is good news and it looks like she is not have spasms.

We have been going to physio for the head tilt but she does not see it as a muscular problem.

We went to the neurologist and he believes her symptoms are from a condition called spasmus nutans. It apparently goes away on its own over time from a few months to a few years. It is usually characterised by Nystagmus (eyes going back and forth), Tilted head and shaking head. However, the neurologist does not think she has nystagmus.

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 so hopefully he can confirm if he sees nystagmus.

Here are my questions if anyone has experience with this:
1) I read that spasmus nutans is only spasmus nutans if the child has nystagmus. Can nystagmus come later after the head tilt/head shake develops more. I read that the head tilt comes from correcting poor vision caused by nystagmus.
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?
4) If its not spasmus nutans and not a tumour what other reasons could be causing this?

Sorry for the long post.
Thanks so much to anyone that has any information that they could share.

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13 Replies:

  • 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 7 of a right tilt she's been doing. I'm hoping it will be gone tomorrow ... for good.
    Anonymous 42789 Replies
    • October 12, 2008
    • 01:54 PM
    • 0
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  • Is she eating normally?
    imgamehere 15 Replies
    • October 20, 2008
    • 06:27 AM
    • 0
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  • If you can get ahold of an eye patch, like a pirate would wear, put it over one eye at a time while her head is tilted. I doubt that this will do anything, as if it were a vision problem i would expect her head to be tilted from the age she could hold her head up, and always to the same side, but i figured it was worth a try. If the head tilt is the result of a vision problem, she should straighten her neck. Heres a link to something called fourth nerve palsyhttp://en.wikipedia.org/wiki/Congenital_fourth_nerve_palsy
    qwertyuiop123 453 Replies
    • October 23, 2008
    • 11:14 PM
    • 0
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  • Thanks for your posts. We've now been to the opthamologist and her eyes are fine. She is eating good and is generally a very happy baby. We're off for the MRI on 12th November but they expect that to be all good. Every doctor I've been to (GP, neurologist, paediatrician, opthamologist, premature baby specialty doctor - part of a follow up program as she was born premature and small for dates) are all very happy with her and think she looks/behaves well otherwise. Since the opthamologist has said she does not have nystagamus then not sure if they will be able to say it is spasmus nutans. Otherwise, I believe the neurologist will just say its nothing if the MRI is ok. I'm booking into another neurologist for a 2nd opinion. She is still tilting her head off and on, 1 week right head tilt, then straight for a few days then 1 week or so left head tilt but less severe, then straight for a few days... She is also still shaking it "no".
    Anonymous 42789 Replies
    • October 30, 2008
    • 01:48 AM
    • 0
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  • hi,My son is 8 months old. He also shakes his head "no" when tired, excited or over stimulated. He also started with a head tilt in one direction off and on and then finally now it alternates direction. His tilt will last anywhere from a few days to a few hours. The shorter episodes are associated with extreme vomiting, trunk curvature and pallor. He usually sleeps through most of it, which is a blessing, and when he wakes he's back to normal again.After an MRI to rule out anything more serious, his neurologist diagnosed Benign Paroxysmal Torticollis. The good thing with that he will grow out of it. The bad thing is there is no treatment.Hope this helps. If you want you can contact me through my blog:www.sundaysatourhouse.blogspot.com
    Anonymous 42789 Replies
    • January 5, 2009
    • 09:48 PM
    • 0
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  • Ask any friends who have children or do a little research for a pediatric chiropractor in your area. I guarantee at least that there's good a chance a chiropractor can help your little one in a way that doesn't require drugs or surgery. Yes, there are times you should never hesitate to see an MD or a hospital for child care, but the general public is not informed about how much chiropractic can do for all phases of life. Please have an open mind about taking your child to a chiropractor (but not so open that Your brains fall out)! I just attended a weekend conference and the woman who spoke related some truly phenomenal cases of treating babies and children. Only, they weren't so phenomenal when she broke it down to the pure science of why each thing worked. For instance, your child may have some type of torticollis, although not in the basic definition of the condition. Transient torticollis sould be caused by a lot of things, tight sternocleidomastoideus muscles on one side which can also lead to problems with the brachial plexus on that side and subsequently all the nervous innervation to the upper extremities. The head shake could be from impingement at the nerve roots that innervate the muscles that perform those actions, like the upper trapezius, the scalenes, the SCMs (sternocleidomastoidei). Birth "trauma" can create shortening or stretching of specific muscles that can then cause further problems if not addressed. If you think keeping your child as drug-free and healthy as possible is important, please look into this for a potentially wonderful discovery for you and your family. Good luck to you and God bless!
    MMoyer 1 Replies
    • February 6, 2009
    • 10:57 PM
    • 0
    Flag this Response
  • Ask any friends who have children or do a little research for a pediatric chiropractor in your area. I guarantee at least that there's good a chance a chiropractor can help your little one in a way that doesn't require drugs or surgery. Yes, there are times you should never hesitate to see an MD or a hospital for child care, but the general public is not informed about how much chiropractic can do for all phases of life. Please have an open mind about taking your child to a chiropractor (but not so open that Your brains fall out)! I just attended a weekend conference and the woman who spoke related some truly phenomenal cases of treating babies and children. Only, they weren't so phenomenal when she broke it down to the pure science of why each thing worked. For instance, your child may have some type of torticollis, although not in the basic definition of the condition. Transient torticollis sould be caused by a lot of things, tight sternocleidomastoideus muscles on one side which can also lead to problems with the brachial plexus on that side and subsequently all the nervous innervation to the upper extremities. The head shake could be from impingement at the nerve roots that innervate the muscles that perform those actions, like the upper trapezius, the scalenes, the SCMs (sternocleidomastoidei). Birth "trauma" can create shortening or stretching of specific muscles that can then cause further problems if not addressed. If you think keeping your child as drug-free and healthy as possible is important, please look into this for a potentially wonderful discovery for you and your family. Good luck to you and God bless! Amen! A good pediatric based chiro could be very helpful indeed. Best wishesDOM
    acuann 3080 Replies
    • February 7, 2009
    • 02:59 AM
    • 0
    Flag this Response
  • Hi! I am also gowing through almost the exact same thing as you are with your little girl. My baby is also 9 months old and tilting her head to both sides. And sometimes it will be straight. We have done chiro, PT, GP and neurologist. Our next option is to get her eyes checked. But one thing that I wanted to point out to you that my neurologist suggessted that it may be is reflux. Babies will tilt their head to pull up their esophagus to be more comfortable. We are on a 2 week trial of some medication. If it doesn't work then we move on to the next thing. Good Luck! Keep posting because it good to hear new possibilities.
    Anonymous 42789 Replies
    • October 30, 2009
    • 04:36 AM
    • 0
    Flag this Response
  • My baby girl is 9 months old and has a severe head tilt every couple months. She was a premie and is diagnosed with reflux. She will tilt her head to her right side so serverely that I have difficulty sitting her up or playing with her because she is so contorted. The doc says it is directly related to her reflux and opens up the air passage for her to breathe better. She does not spit up nor have any "normal" signs of reflux. The head tilt is so disturbing though because it makes me feel as if there are other things going on with her digestion. They want to do an endoscopy but I want to wait until she puts on weight. She is only 14 pounds. I was just wondering if anyone has any experience with this and could share any information at all. We're in the middle of attending different appointments to figure out what is wrong with my little girl but I'm trying to find out as much information as I can at the same time. My 9 month old 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 just finished on her 3rd time of having it tilted. When she is reaching forward it seems to straighten up but I think that is because her arms are reaching out forcing her head up. When she is sitting or on her tummy, it is tilted. It does not tilt to the left. 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 month since I've been watching for it so that is good news and it looks like she is not have spasms. We have been going to physio for the head tilt but she does not see it as a muscular problem. We went to the neurologist and he believes her symptoms are from a condition called spasmus nutans. It apparently goes away on its own over time from a few months to a few years. It is usually characterised by Nystagmus (eyes going back and forth), Tilted head and shaking head. However, the neurologist does not think she has nystagmus. 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 so hopefully he can confirm if he sees nystagmus. Here are my questions if anyone has experience with this:1) I read that spasmus nutans is only spasmus nutans if the child has nystagmus. Can nystagmus come later after the head tilt/head shake develops more. I read that the head tilt comes from correcting poor vision caused by nystagmus.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? 4) If its not spasmus nutans and not a tumour what other reasons could be causing this? Sorry for the long post. Thanks so much to anyone that has any information that they could share.
    rachkro 1 Replies Flag this Response
  • Oh my god i'm so glad i've just found this website.My little girl is 11 months of age and her symptoms are identical to your little girl's. This is crazy. I'm going out of my mind because no-one seems to have an answer. She was 5 weeks prem. I had to have an emergency c section because I was suffering with severe pre-eclamsia. Because no-one has come up with any answers I have even started wondering whether a certain medicine i was given the day before her birth was the cause of it. I was given 2 large doses of Magnesium Sulfate. They told me it would not harm my baby just make her drowsy but now having researched this medicine it seems it can really harm the baby's central nervous system. Other symptoms included fluid on the baby's lungs and difficulty in breathing. Funny enough my baby ended up in intensive because of this but no-one told me that it could have been down to this medicine. It is only through doing my own research on this medicine that i'm starting to wonder whether damage to her central nervous system could be the cause to the problems she is having with her head keep tilting on both sides.We noticed her head tilting to one particular side as soon as we brought her home from the hospital. Professionals said there was nothing to worry about. It has been going on all this time. She is now seeing an experienced physio who is very frustrated because she wants to get to the bottom of it. She is now referring me to other professionals to see if they have the answer. She would suddenly drop her head just like your little girl's however she seems to have stopped that now. She also shakes her head 'no' exactly like your little girl. We always put it down to tiredness but she does it when she's eating or at random times of the day. Her head tilts to the left for at times over a week, then sometimes it goes straight for days and then decides to tilt to the right. Sometimes it goes straight in front of us and stays that way and then tilts again. There is no pattern, its all over the place. So when i read your email I couldn't believe it. Its exactly the same. Please please please inform me if you ever get an answer to this problem. I like you am worried and I just want to know what has caused it and if it is a long term issue and if it isn't long term what can be done in the meantime to help our little ones. x
    brandy1475 1 Replies Flag this Response
  • Any updates? I would love to read an update because our daughter is showing similar signs. Thanks.
    Anonymous 42789 Replies Flag this Response
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  • any updates on the MRI? I hope you still check this site. my 9 months old son has the exact same symptoms as yours...the EEG is normal. waiting on the MRI. Please let me know how your child is doing.Thank you
    Anonymous 42789 Replies
    • September 7, 2010
    • 03:01 PM
    • 0
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  • I really hate to put this out there becuase no one wants to entertain this might be the early signs of autsim. Its very dectecable in the infant stages if you know what you are looking for. I have a cousin who was diagnoised with it early after her speech never developed. It was the hardest time for the family as no one up until now had ever had this disease in our family tree so we had no clue what we were up against. I would not go to your regular doctor because they will just brush it off and hope the problems go away. I read that all these tests came back normal and that is the same thing my Cousin went round and round for a year with stupid doctors who did not know the signs either. I would strongly suggest that you seek out an Autistic Specialist(as the symptoms are broad and very from child to child) and get that piece of mind that it's something a child "grows out of" which i dout because she is increasly having new signs of head dropping and arms displayed etc. Autism will not be found in blood work as many parents are starting to understand, DOCTORS cannot find it in our dna strands so they cannot truly diagnose it, hence the behavioral specialist that work with Autistic families in particular. when it comes to autism, catching it early makes a huge difference. The younger your child, the greater the impact of treatment on symptoms of autism and other developmental problems. So watching for warning signs in babies and toddlers is vital.If you catch autism in its early stages—ideally by the age of eighteen months—you may be able to interrupt its development and minimize problems. But no matter your child’s age, don’t lose hope. Treatment can reduce autism’s effects and help your child learn, grow, and thrive.CITE; http://www.helpguide.org/mental/autism_signs_symptoms.htmOther Early Signs in fants:Common self-stimulatory behaviors:Hand flappingRocking back and forthSpinning in a circleFinger flickingHead bangingStaring at lightsMoving fingers in front of the eyesSnapping fingersTapping earsScratchingLining up toysSpinning objectsWheel spinningWatching moving objectsFlicking light switches on and offRepeating words or noises
    Anonymous 42789 Replies
    • January 4, 2012
    • 11:26 AM
    • 0
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