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.

[Saraswqg60]

My son also has tilt that switches sides. He was diagnosed with congenital muscular torticollis and we started stretches and pt around 3 months. When he suddenly switched to a right tilt. I noticed that if he sleeps on his left side he will tilt left and when he sleeps on his right side he will straighten out but if I allow him to sleep on his right side again the next day he will wake up with a right tilt. He seems to favor tilting to the left and I have pictures of him when he was minutes old with the classic left tilt right face rotation. I have completely stopped doing stretches but I'm not sure if I have seen any real improvement. He does seem to be straight most of the time but iI have to constantly monitor what side he is starting to tilt to and what side he needs to sleep on. He is now 8 months old and won't sleep on his back. He seems like a happy little guy who is very social babbled up a storm and is already understanding some words. He is almost crawling and sitting without support and rolls all over the place but seems like he might be low tone in his neck?He also has a slight variation in his right eye. One doctor said he was a typical child with normal tone but noted his left arm lay sprint when on the exam table. Not sure what that means? He is pretty much on track with all his milestones a little delayed on some motor skills but not by much (mostly with reaching over head) Anyone have any thoughts or experience with this? I also thought if anyone was having a similar issue with tilt switching side that they might want to pay attention to what side lo is sleeping on.

[TasonB]

Hi, my soon to be 6 month is experiencing the same exact thing that you mentioned.  How is your son now? Did his issues resolve?

[Tarasheridan]

Hi - my son JP is now 8 months old.  I noticed he had torticollis a few weeks after birth.  My doc said it was the way he layed in me when I carried him.  I actually had to have a csection because his head was turned and chin up - he wouldn't drop down for me to deliver.

So my doc gave me excer. to try at home.  She said 2 times per day to turn the babies head gently from left for 10 secs and right for 10 secs in reps of 3.  Then do the same time/reps and turn babies neck gently - ear to shoulder and then ear to shoulder.  They helps stretch babies muscles.  She said that since he laid like that for so long in me - it is comfortable for him.  He still does it.  He is stronger on one side vs. the other.

So a few months ago I brought it up to the doc again.  She recommended he be evaluated.  My state (DE) has a STATE program called "Early Childhood Developmental Watch".  They send out a PTherapist and she evaluated him.  She said he qualified for the program they offered for children under 3 with delayed motor skills.  The best part about it is that they do NOT CHARGE - its FREE!  Ant they will come to my home to do the PT or his daycare.....

So they come once a week right now and stretch him and do different excer. with him.  The PT said that since he is now rolling around and we always lay him on his back (since he doesn't sit) that the baby is just like "hmmm?? This is fine - laying here is great - why sit up??"  They don't know any different.  So when we put him in the car seat or any other seat - we take a piece of foam (from him infant positioner sleeper) and stuff it between the side of the seat and his head.    This helps him see the world STRAIGHT.  

But some of you mentioned your childrens eyes... The PT from Bayada Nurses said that if you do not get early help for a baby with Torticollis that it could cause facial deformities (sp?)  sorry and I don't want to scare any of you... But he said if babies head is tilted to a particular side for a long time, that they will compensate with the "open" ear (the one not closest to the shoulder) and that the ear will actually start to poke out to hear better.  He said the same thing about the eye.  Eye will start to compensate from the other eye and move up slightly.  Same thing with the mouth.....Scared the **** out of me..... But my little one is cute as a button and doing his PT.  They said if they don't see improvement after 6 vists that they will bump it up to twice a week.

He is 8 months, has 4 teeth, eating solids and such, sleeps great, rolling EVERYWHERE but will NOT sit up.  So we try to work with him on that.

Hopefully my story helped you.  If you have any questions, please email me at ***@****

Tara

[Ginneh]

Wow, I haven't checked this in a while. My daughter was eventually diagnosed with Chiari I Malformation from results that were gotten from her MRI and we took her for genetic testing and she was also diagnosed with Williams Syndrome. We met with a neuro-surgeon to discuss an operation for the Chiari, but since Williams Syndrome and Chiari had a lot of overlapping symptoms (feeding difficulties, delayed milestones, motor delays, low tone among others) we decided against it, and to continue the therapies to see how she progresses. She also has Pulmonary Stenosis.  I never did determine about the torticollis...she continues to get physical therapy. For the most part its gone away, every now and then she gets tilted a little, but generally its gone.  Her PT told me recently that a lot of kids that have torticollis that switches sides actually have reflux, so she also takes medication for reflux.  The neuro-opthomalogist changed his mind and does not believe that she has 4th nerve palsy anymore.  It's been almost a year since all of the new diagnoses, so we will be following up with her neurologist, cardiologist and Williams Syndrome clinic to see what progress she has made and assess where she is now. Overall, she is doing well. The best advice I can offer is to just stay on the doctors and make them do what you want them to do, never settle. In my heart I knew there was something wrong and I kept going until I got the RIGHT answers.

[selmaS]

Has anyone suggest u check for Ehlers Danlos?........


Good luck
Godspeed
"selma"

[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

[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

[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 !!