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Behaviour/development

Talk to others about child development and behaviour stages here. You can find more information on our development calendar.

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Original poster

Can anyone beat the medics and tell me why my 5 month old has a tilted head

22 replies

NigellaLawless · 08/02/2012 22:10

Sorry for the rubbish title..

My 5 month old DS has never been able to hold his head up straight for more than a few days after which it will drop/tilt to either the left or right side, after a couple of weeks the tilt will correct but then a few days later (sometimes only 1 or 2) his head will drop/tilt to the other side. THe tilt is not very severe most of the time, but occassionally he has short periods (maybe 10 or 20 minutes) where his head drops completely so that his ear is resting on his shoulder and he can't move it at all, this severe tilt usually corrects itself after a nap.

He has been having physio for 3 months now but the physios have admitted that they have no idea what is going on and have never seen anything like it before. They have ruled out torticollis as that usually only makes a child's head drop to one side and they seem particulalry confused about why it corrects and then drops again.

I work with children and have never heard of anything like this (nor have my colleagues)

We are seeing a paediatrician at the end of the month and I'm hoping she can shed some light on it but in the mean time do any of you have any experience of this? Or any ideas of what it might be?

OP posts:

Theas18 · 08/02/2012 22:12

Have his eyes been looked at? A head tilt can compensate for a visual problem

Original poster

NigellaLawless · 08/02/2012 23:26

Ooh never thought of that! Thanks I will ask about it when we see the paediatrician.

He is having a hearing test soon as he doesn not always turn to noises, but that could be due to his neck being stiff from the tilt.

OP posts:

outofbodyexperience · 09/02/2012 00:41

v low tone in his neck muscles? might explain why it's better after a nap as kids with low tone fatigue faster? if so it should just be lots of physio to strengthen... which i assume they are doing anyway... how v strange! does he have low tone anywhere else?

Original poster

NigellaLawless · 09/02/2012 08:11

hi outofbody, in the last session we identified that he is not using his arms, specifically his left arm as much as he should and although he can use it to bring things to his mouth he often just holds it very straight by his side so over the last week we have been working on that and its improving.

He has lots of tummy time and can hold his head very clear of the floor but is only just starting to be able to move his arms forward (up until last week he would keep them tuckeed under him or straight by his side unless you moved them for him).

In the last physio session he was only in his nappy and they did a really good examination of him. They couldn't find any obvious physical problems.

other than his neck he is just perfect

OP posts:

Practicallyperfectnot · 09/02/2012 08:25

Phaps ask your physio to check if he has hypermobility - www.hypermobility.org. If they are unsure what this means, the physics at Gt Ormond St can advise over phone. Search at MN hypermobility. Both my children and I are hypermobile and we all have had delay in learning and strengthening our head control but all ok now. We can seem to have low tone but this is a red herring instead it is the stretchy muscles, ligaments, skin. HTH

Practicallyperfectnot · 09/02/2012 08:26

Oops! Physios not physics!

Original poster

NigellaLawless · 09/02/2012 08:42

thanks practicallyperfectnot (i'm sure you are really ) i will look into that. Next physio is not going to be until after paeds appointment (as i think they realise there is little point doing anymore until they know what they are dealing with) so I will raise it with the paediatrician

OP posts:

Fogie · 09/02/2012 08:43

Benign paroxysmal torticollis? (I have only googled and have no expertise!)

This looks as though it can come and go, starts in early childhood. Do you or anyone close to him in the family suffer from migraines?

I'm glad you at seeing a paediatrician, I would have suggested that if not already referred. They see lots of children, with many unusual things, so will be well placed to look at his head and arm issues.

Hearing test also good. I wondered if ears/balance at first but that would not explain his lack of use of arms.

I would ask the physio to write a report to give to the paed - although I'm sure she has.

4madboys · 09/02/2012 08:53

i saw one of those prog on mystery diagnosis things once on home and health and there was a little boy in america who sounds veyr similar to your ds! i dont remember what diagnosis he got int he end, but he did then get treatment and there was much improvement. maybe google the prog and you might find a link? he was a mexican little boy if that helps :)

Fogie · 09/02/2012 09:04

The other thing I should have said was to go to the Paed with an open mind, even if you are sure you have found your own diagnosis.

They are obviously much more knowledgeable than a bunch of people on the internet who can google

Original poster

NigellaLawless · 09/02/2012 10:23

thanks 4madboys will have a google

Fogie, you may be in line for the prize! Thanks to your suggestion i have had a look at benign paroxysmal torticollis and it seems to fit ds to a t! Don't worry though i won't march into paeds apt and tell them i have already diagnosed him via the internet although i think i will ask whether a few of the above suggestions are possibilities, particularly bpt

If there is anyone out there who has experienced these symptoms with their lo i would love to hear how it worked out for you

thanks everyone I love MN

OP posts:

Fogie · 09/02/2012 10:41

Good luck! I hope you get some answers.

Will you let us know on his thread? nosey

whatsthatnoise · 09/02/2012 11:12

My dd has low muscle tone and hypermobility and she used to do this although she was alot older than your ds nearer 10months. Her physio still works on her head control now and she is 3.

Good luck with the paed they do know what they are talking about my dd's first physio was a bit baffled too. :)

schobe · 09/02/2012 11:14

So interesting Thea. My DD did this and it soon passed and we forgot about it.

She is extremely long-sighted and has worn glasses since 13 months. I have never linked the two things before.

Chundle · 09/02/2012 12:07

My cousins dd had torticollis thing took couple months physio to correct it

Original poster

NigellaLawless · 09/02/2012 23:24

Fogie will definatley come back and update, paeds appointment is right at the end of the month, so it will be a few weeks yet.

whatsthatnoise thanks for sharing your experience, hope you don't mind me asking a couple of questions? Does your dd have any discomfort as a result of her head tilting, somedays my ds is really grumbly and I do wonder if his neck is causing his pain? I know that sometimes I often unconsciously tilt my head when I look at him and by the end of the day my neck aches like mad! Also has it affected your daughter's development at all, did it take her longer to sit unaided or crawl?

Chundle thanks for your experience, glad to hear that the physio worked for your cousins dd. I have to say that the physios are great (even if they aren't sure what the problem is). I have been told by the physio that it is 'not true torticollis' though as it changes sides and corrects from time to time.

OP posts:

CervixWithASmile · 09/02/2012 23:29

For Torticollis cranial sacral therapy or cranial osteopathy can be effective. Sometimes can be related to a traumatic birth I think.

Original poster

NigellaLawless · 10/02/2012 20:01

Cervix love the name I have heard a lot about cranial osteopathy, it sounds really interesting. I will see how it goes with the paediatrician before pursuing that but thanks for the suggestion.

OP posts:

chipmonkey · 10/02/2012 20:21

I see Theas beat me to it! Definitly get his eyes checked. It may be that he has difficulty using both eyes together as a team and tilting his head means he can mainly use just one.

Original poster

NigellaLawless · 28/02/2012 20:56

Hi all, just came back to update. We saw the paediatrician today (who was possibley the nicest doctor I have ever met) the head of the physio dept (who saw my son last time) was in the clinic too.

They were much more interested in the way that he uses his left arm than his head tilt and spent a lot of time examining him and geting him to do different movements.

They feel that he is still too young for a definite diagnosis as they say that some babies have weakness/stiffness in certain muscles but just grow out of them by their first birthday, but if he doesn't grow out of it and the weakness persists they think it will most likely be mild cerebral palsy.

TBH I am really relived as I have worked with lots of people with cp so I know that mild cp is absolutely nothing to worry about and anyway it might not even be that.

Oh and re his hearing, he has fluid behind his ear drums. Again he might grow out of it so we will have a few more monitoring appointments and at worst he might end up with gromits.

So thank you everyone for your help

OP posts:

skewiff · 28/02/2012 21:56

I wondered if it might be hemiplegia - which is mild CP that affects one side of the body.

My son has this ...

Original poster

NigellaLawless · 28/02/2012 22:17

Hi skewiff, yes the doctor did mention hemiplegia, but said that they would not like to diagnose too early as he may develop out of it yet. She examined him really thoroughly and was confident (as am I) that only his head/neck and arm seem to be affected.

If you don't mind me asking how old is your son? Does the hemiplegia affect him in a significant, day to day way?

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