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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