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Julie's Website

New! PT 2011
August 2008 Bethlem Myopathy/Ullrich CMD conference notes
October 2005 Bethlem Myopathy/Ullrich MD conference notes
Update 2006
Update 2005
Update 2004
Julie's Hypotonia Story
The Medical Puzzle
The Muscle Biopsy
The Diagnosis
Physical Therapy--updated in 2008!
Seating at school
Julie's Wheels
The Sleep Studies
Julie's flexible Daddy
Bethlem Myopathy--DNA and Muscles
Julie's Bethlem Myopathy Book

As an infant, Julie turned her head right because of the torticollis.

Julie's torticollis was picked up by her pediatrician when she was a few months old. Torticollis is a condition where the child is born without full range of motion in the neck. Julie could not fully turn her head to the left and preferred to turn and look right, especially to suck her thumb. The pediatrician showed us exercises to do and by around six months, she had full range of motion in her neck. I have since learned that a lot of kids with myopathy were also born with torticollis.

However, lying on the right side of her head much of the day and certainly the night led Julie to develop a flat spot (plagiocephaly)on the right back side of her head. The picture does not do it justice--it was pretty obvious (at least to me!) in person! We saw a neurosurgeon to determine if Julie would need a helmet to reshape her head. He felt that her flat spot was mild and that repositioning her would resolve it without intervention.

Julie at 9.5 months old. Her flat spot is actually better, but still there.

We used a baby sleeping wedge to position her on her left side when she was sleeping from about 5 months old until she could roll at about 9 months old. We also put crib toys solely on her left to encourage her to look and turn that way. Same with the Gymini and the stroller. We also tried to keep her upright as much of the day as we could in her saucer or in the baby bjorn carrier. She didn't sit well until between 8 and 9 months old, so this took effort!

Another side effect of her flat spot was that her left eye became somewhat distorted and her left ear was somewhat tilted. Both of these features came back to normal as her flat spot resolved and she started spending more of her time sitting up.

Julie at 7.5 months old--Valentine's Day!

Now, she does still have a slight flat spot left over, but with her hair, you can't see it at all. If you think your child has torticollis or a flat spot, it's important that you bring it to the attention of your pediatrician and/or neurologist. Early intervention is important!