Nerve Palsy? Head Tilt? Torticollis? BPT?

[Ginneh]

Hi, My 9 month old has had head-tilting episodes since 5 months. She was initially diagnosed with Congenital Muscular Torticollis and referred to CT Scan and X-Rays, both which were normal. She was referred to physical therapy for developmental delay and neck stretching excercises. Her head tilt keeps switching sides every 7-10 days and puzzled her PT and pediatrician. I found some information about BPT online and gave it to them. The pediatrician said that she did not belive that it was BPT, and even if it was we would still have to rule out more serious diseases/disorders first. In addition the BPT wouldnt explain the developmental delays and muscle tone issues. She is 9 months and still not sitting unsupported for more than a few minutes. She has muscle tone issues - low tone in trunk and high tone in extremeties. My husband and I suspected Cerebal Palsy, which her doctors also dismissed. I guess because her symptoms are not considered "severe" enough.  

Her head tilt episodes have been consistent for the past 3-4 months, with the tilt to the right more severe than the left tilt. We were referred to neurologist, who also did not belive it is BPT, but noticed a slight droop or weakness in her eye. We were then referred to neuro-opthomalogist for examination for Fourth Nerve Palsy. We have not had that appointment yet. The pedicatrian thinks this is incorrect too because with fourth nerve palsy the head tilt does not normally switch. Also, it still doesn't describe the develop. delays and muscle tone.  I have been reading about fourth nerve palsy and I can see a slight variation in her left eye, but it doesn't look anything like any of the images I have seen online. My husband and the child's daycare providers can't even tell. I was thinking that the head tilt was causing the eye variation adn not the other way around.

We were also referred for a brain MRI. She will continue to get PT as well as other early intervention services - more PT, possibly OT and SI. She is delayed in fine motor, gross motor and cognition.

My questions are, is there anything else that we may be overlooking that we should suggest to the doctors? Are there any disorders that would explain the muscle tone problems and the head tilt? Should I investigate BPT further? Her father gets migraines so it seems feasible. The early intervention therapists also voiced some concern because her voice is deeper than the average baby's voice. Could there be something wrong with her throat or neck? We are at a loss right now because all the doctors seem stumped. We have been having 3-4 appointments per week concerning her issues but have not gotten any answers.

[carmitov]

Often low tone causes remain unknown. Has she been evaluated for vestibular or other sensory integrative dysfunctions that may make it difficult for her to sustain her head in mid-line. That might explain her tilt variations. Look up sensory integration and infants. Has she had an eval from a experienced occupation therapist, Has she had a good audiological work-up to look at her hearing and inner ear function in regards to voice, balance and head position regulation? Does she respond to all sounds and noises?

By the way, my 11 year old  low tone, delayed dau is an A student in middle school. She's  still clumsy and not too active, but she's happy, smart and a great kid.

Good luck. It sure can be frustrating !!

[tazdaz]

Hello,

I was wondering Ginneh if you have had any luck finding out further information regarding your daughters symptoms?  My daughter is experiencing the same sort of symptoms however her head tilt is only to the right.  Any information would be great!
Thank you
Tammy

[kk1968]

I also would be curious to know what you have found out, my 7 month old son has had intermittent torticollis that also switches sides but more prevalent on the right.  He also seems to have a weak torso and cannot yet sit on his own.  As well, he has had a sluggish bowl since his 4th week, same time the toricollis started.  His extremties often are tight (hamstrings and hips) and make postures his arms and legs in way that does not seem qute normal.  His fine motor skills are good and cognition is good.  We are going to the neurologist on Friday, but all other professionals we have seen also seem to be stumped.  I was assuming I was going to get a CP diagnosis, but am curious to know what you have found out so far?  Please let me know.
Kristin