# Any benign paroxysmal torticollis mommies?



## lovemybabe

My LO has benign paroxysmal torticollis and I don't know what to do when she gets stiff in that position. Does any one have any helpful tips? Thank you.


----------



## BabyBumm

My son had torticollis in his neck when he was a baby due to a sternomastoid tumour (I never did fully understand!)
I had to give him physio and gently stretch and turn his neck every day. Didnt do much good but thankfully he outgrew it.
He's 9 now and wears his hair longer as he has a mis-shapen head from being stuck in position and one ear is flat and the other normal.
Its not so noticable as he gets older. He doesnt notice it and he has never been bullied over it, which I was very worried about.
I'm sorry I cant give any practical advice as it was 9 years ago and I was young and naive!


----------



## mae10

My baby girl (about to be six months old) may have this. I am only aware of this due to my own research online. She has had a head tilt (always to the right) since shortly after she was born. The first "episode" that really caught our attention was when she was three months old...she woke up with head tilted severly to right, was in a daze for about a minute and then vomitted after about two hours and her head went back straight. We took her in to the pediatrician- had an EEG (normal), urine test (normal) and blood work (normal) done. They conlcuded she had a mild case of Torticollis- mild because she could turn her head in whichever direction, so they felt it was not impairing her in any way. Since then, she has had reoccurances of the head tilting- once or twice a month- each time it lasts about a week- severe for the first day or two and then it lessons up- but still tilted to the right before correcting and going back straight. Earlier this month, after an episode- they figured it was due to a swollen lymph node (she had a fever a day preceding the head tilt) and therefore she had a "crick" in her neck. It improved and then last weekend went to the right again. It is still a little crooked, but about to go back straight. I think her mood is fussier during these "episodes", but thankfully there has been no more vomitting and her whole body does not go crooked like i have read happens with other babies. Nor does she seem to be in too much pain (other than being moodier and almost angry at times). I have her six month appt next Thursday, during which I am going to mention this diagnosis and seek a referral to a neurologist...hopefully i can find one with some knowledge on this disorder. It is frustrating, but I really feel they won't know what I am talking about due to the rarety of it...I am also not sure I should put her through all the testing they will want to do for differential diagnosing, since it is not so bad right now, but I am also worried about doing nothing and waiting to see if it worsens!! I guess I should start looking for a neurologist who knows and understands this disorder...


----------



## mae10

I typically just massage her neck and do the stretches for torticollis...head straight, stretch chin to each shoulder...however, I am not sure it helps much- I figure the massage is best- since it might be relaxing.


----------



## todteach

This may be what we're dealing with right now. I'm not too sure yet. We have been referred to infant development, should know more soon. I feel so sad for him, and wish I knew what to do?


----------



## 1mommy1

my baby girl was diagnosed with this...and has been a long and emotional journey to get where we are today. She is still dealing with this at 18 months but i feel like its getting better with time and hopefully will go away completley...but im thankful that she is healthy and does not have any other issues that i was once told she might have....to all the families going threw this stay strong..easier said than done i know its very difficult to see your baby suffer and have no control


----------

