Benign paroxysmal torticollis of infancy

[Crystalian]

My 14 month old son has been having episodes of head tilting since about 2 or 3 months old.  He will tilt his head mainly to the left side for day and then the next day it is gone.  His doctor had sent him to a ENT doctor and eye doctor and they say everything is fine.  She has checked his neck muscles and says that he dosn't have torticollis but I am wondering if she has ever heard of Benign paroxysmal torticollis. She at first wanted him to see a neurologist for a sacral dimple that has a hair growing out of it but then changed her mind about it.  Maybe it is the sacral dimple that makes it look this way and this may sound strange but it looks like his butt is crooked. He can walk and has been walking since he was 11 months old but he falls alot but that could be due to that he is only 14 months old.  He also at 3 months old had times where he would throw his arms out to the side and it looked like he had the wind knocked out of him he would have a blank stare do that for a few seconds and then let out a scream and then do it all over agian. Everything else about him seems normal he is healthy and happy. I guess my question is that could he have Benign paroxysmal torticollis and should he see a neurologist if his head tilts don't get better.
Thanks

[tcbvball]

Dear Crystalian - My daughter is only 4 1/2 months old and has been diagonosed with Benign Paroxysmal Torticollis.  Her pediatriian was not the one to diagnose her.  I was insistent on having her see some specialists after noticing at only a month old that her head was tilted to one side and she was stiff.  She goes for days or approx. a week with her head tilted to one side, then she'll wake up with her head straight and it'll stay like that for anywhere from a few days to nearly 2 weeks and then her head will tilt ot the other side.  (it switches from side to side)  She was diagnosed by a chiropractor that specializes in pediatrics, as well as physical therapists at the nearby children's hospital.  Although my daughter seems to be developing normally and her pediatrian is not concerned, I plan also to take her to a neurologist to find out more.  

[seansmommy]

My son was finally diagnosed with benign paroxysmal torticollis of infancy. He also had recurrent episodes of head tilting from side to side. I did my own research online and discovered BPT quite by accident. When I mentioned it originally, none of the doctors had ever heard of it. But it is the only thing that fits. We just had a final MRI to rule out anything more serious. What you describe sounds similar to our experience as well.

[selmaS]

Hi...not to throw fuel on the fire, but has ur child been checked for tethered cord?
U mentioned the dimple and to me it was a flagg!

If u have not had MRI's done I suggest u do like seansmommy and rule some other conditions out.

Good luck to u all!!

Godspeed
"selma"

[Mon24]

My daughter, now 14, presented with symptoms identical to your child.
After months of exams at the National Children's Medical Center In DC, neurologists, EEG"S, MRI's, therapy, a coworker of mine, a pediatric physiatrist presented me with a possible diagnoses after my reports to her.  I conveyed the diagnoses to my daughters MD's who seemed happy to accept it.
Her symptoms decreased in frequency and subsided by age 3.  By that time she had fallen several times and received stitches.  At approx age 8-9 she began having severe headaches ibuprophen and Imetrex helped little, now, these too have decreased in frequency and she is better able to tolerate them when they do occur.
Good Luck,
Monica

[seansmommy]

FYI-To all surfers who are looking for parents with kids of this disorder, there is now a group started on FaceBook= benign paroxysmal torticollis- and I also found a yahoo group called bpvkids.

[amandakclark]

My five month old daugher has been diagnosed with BPT.  I am doing research to find out more information because I am the type of person that needs to know WHY???  

I took an anti-nausea medication throughout my pregnancy.  Did any of the other moms with children with BPT take any medications during pregnancy?  

[Dr Rajgopal]

Hi,
The symptoms that you have mentioned do suggest of Benign Paroxysmal Torticollis . The characteristic features of this condition are- head tilt, infantile seizures, still eyes, loss of balance, vertigo, vomiting etc. You have mentioned that your son would throw his arms on the side and would stare blankly for some seconds when he was 3 months old. Those were infantile seizures. As he has other symptoms of head tilt, loss of balance as well, you must seek medical attention. Please consult a neurologist for the management. Hope this helps you. Take care and regards!