Torticollis & Plagiocephaly Article

Doctor notices more cases of condition that causes flattened skulls, tilted heads
by Pat Shellenbarger The Grand Rapids Press
Wednesday May 28, 2008, 6:35 AM

GRAND RAPIDS -- It wasn't all that noticeable at first. Then, about three months after their daughter, Ellie, was born, Tom Nyenhuis said something about it.
Doesn't Ellie's head tilt to the side? he asked his wife, Lisa.
"I kind of thought he was crazy," Lisa said. "I thought, she's a newborn; they have floppy heads. I'm with her all day long. Why wouldn't I notice it?"
But then a friend said she, too, had noticed Ellie's head always tilted to the right. Lisa called her pediatrician, Dr. Ken Fawcett, who diagnosed torticollis, a shortening of the neck muscles, pulling Ellie's head to the right. Plus she had a related disorder called plagiocephaly, a flattening on the right side of her skull.
The Nyenhuises had never heard of either disorder.
Press Photo/Emily ZoladzAll better now: Ellie Nyenhuis, nearly 1, of Cannon Township, holds the helmet she wore for four months to help correct her case of torticollis, a condition that shortened the muscles on one side of her neck and flattened her head.
Dr. Dayle Maples had.
"I see it very commonly in my clinic," said Maples, a pediatric orthopedic specialist at Helen DeVos Children's Hospital and Mary Free Bed Rehabilitation Hospital.
In fact, she has seen an increasing number of babies with plagiocephaly since 1992 when the American Academy of Pediatrics initiated its "back to sleep" campaign, urging parents to place newborns on their backs to avoid sudden infant death syndrome.
Maples said parents should continue following that advice, but they also should be aware that infants who spend too much time lying in one position can develop the misshapen skull characteristic of plagiocephaly. When awake, babies should be given more "tummy time," she said, allowing the skull to develop the more-typical symmetrical shape.

FACT SHEET
On the lookout
Plagiocephaly warning signs:
• Flatness on one side or back of head.
• Irregular, unbalanced head shape
• Uneven cheeks, ears or eyes
Torticollis warning signs:
• Head rotating or tilting to one side
• Low tolerance for lying on tummy
• Poor head control
• Visible arch in trunk of body

Plagiocephaly can occur without torticollis, Maples said, but torticollis can cause plagiocephaly.
About one in 300 babies is born with torticollis, and 80-90 percent also develop plagiocephaly. In many cases, the torticollis results from the baby's position and limited space in the womb, Maples said.
Lisa Nyenhuis believes that caused Ellie's torticollis and plagiocephaly.
Ellie sat in a high chair at their Rockford-area home one recent morning, eating pancakes and bananas, offering a soggy handful to a visitor. She's a year old now and shows no sign of either condition.
"I think I actually made it worse by the way I was carrying her," Lisa said, "but I didn't know anything about it."
She usually carried Ellie with her right arm, leaving her left hand free to care for her older child, Sam, now nearly 3 years old.
Last fall, her pediatrician referred Ellie to Mary Free Bed for therapy. Using a laser scan of her skull, technicians there custom designed a plastic helmet for her to wear 23 hours a day, allowing her head to grow into a normal shape.
Twice a week, Lisa Nyenhuis took Ellie to Mary Free Bed for physical and occupational therapy.
Several times a day, she exercised her at home, stretching the muscles on the right side of her neck and strengthening the muscles on the left side.
Left untreated, Ellie's head would have remained tilted to the right, her skull would have developed an asymmetrical appearance, and her jaw would have protruded to the left.
She likely would have developed vision, hearing and spinal problems.
She no longer wears her helmet or goes for physical therapy.
"Everything's fine," Lisa said. "It was curable. It was a matter of sticking with all the exercises. I keep watching for it now."
She decided to speak publicly about it, hoping to alert other parents.
"It was amazing to me how common it was," she said.


I just thought this was a really great article explaining what Torticollis & Plagiocephaly are and how they are related. It sounds like Ellie's case is very similar to Emily's. I am happy to read that Ellie is now doing so well! Just thought I would share.

5 Months Old Already!!

If you can believe it, Emily is 5 months old today.
We were quite busy this month. We started cereal for the first time, it's been a month of trying to get her to eat it and she still is not interested. Maybe some day :)
She went to visit Great Grandma and Grandpa Miiller and Great Grandma Marion in Indiana. She met Great Grandma Harms when she came up to our house to visit after she got home from her winter in Las Vegas. Emily also got her mold done for her DOC band and got her helmet last week. Things are going well so far.
We celebrate our first mother's day which was really fun and Ali and Morgan came to visit from Minnesota.
So it's been quite busy!
Enjoy all the pics: http://photos.walmart.com/shareethumbnailshare/AlbumID=28570424/albumcount=1/p=869261211811073817/l=11393103/g=3242809/cobrandOid=1011/otsc=SYE/otsi=SALB/pns/share/p=869261211811073817/l=11393103/g=3242809/cobrandOid=1011/otsc=SYE/otsi=SALB

Planning Ahead...

The rising cost of college is really starting to scare us, so we are planning ahead.

We're going to have to start charging....

Em and her helmet

Emily is doing great with her helmet. She got it on Friday afternoon and stayed overnight with Grandma Bonnie on Fri and Sat nights. She slept through the night both nights, so she is doing great. She seems a little uncomfortable, but is adjusting quite well.

Keep us in your thoughts!!

Busy Few Weeks...

It's been a busy few weeks and I am so far behind on blogging...let's see...where to we start? ha ha

Well my last post was Emily getting the plaster mold done of her head for her helmet. We go in today to pick up her helmet and do her first fitting. Kory and I are both a little nervous that everything goes okay. We are hoping to start her wearing it Monday morning. We'd like to get the painting done the next few days if we can and Ryan Congdon is going to help us on Sunday night (thanks Ryan!!).

Early last week we had some issues with our water not coming out very well. We called the plumber and they said the filter was clogged and the pressure valve needed to be replaced. So he did both things and went on his merry way. Well that lasted a day or two and then the water started acting up again. This was just in time for our house guests (Alison and Morgan) last weekend. So it was a little hectic. We were able to flush the toilet (kind of) and wash our hands/brush our teeth, but there was not nearly enough water to take showers. So we packed everything up and showered at Kacey and Tony's (thanks guys!!). It ended up okay. Then I showered the next two days at my sister Casey's. We called the well people on Saturday and were going to charge an insane fee to get it fixed on the weekend, so we had to wait until Tuesday. They came out and $3,000 later we got a new well pump. Supposedly it will last us another 20 years, but that was totally unexpected. So with the last two weeks of finances with Emily's helmet and the well we are a bit tapped out (ha ha!! that's a joke!!).

Now to my fun weekend with Ali and Morgan. I was SOOO happy they came down from MN for a girls weekend. We had a blast even if we didn't get to shower! ha ha Here are some fun pics:

Here Morgan is doing Uncle Kory's hair. He was such a good sport!

Here is Em getting a bath before we ran out of water!!

Here is a cute pic of Ali and Morgan at the outlet mall.

Here is Morgan riding one of the cars at the outlet mall. She's having a blast!!

Here is the 4 of us after we're all cleaned up at Kacey and Tony's. We're heading out to Laredo's for a Mexican feast!!

Lisa and Calvin also stopped over to visit! Thanks guys!!

Here is Tina, Ali and me after we stuffed ourselves with Mexican!!

Here is Miss Em and Miss Morgan at the farmer's market.

We had quite the busy trip, but had a great time! Thanks for coming down girls.

I will post more this weekend after we get Em's helmet.

DOC Band Update

Emily had her appt today to get the plaster mold of her head for her DOC band. Kory and I were prepared for a very traumatic Dr appt. We got there and Mary was so nice. She walked us through all the steps and then said...okay...strip her down!!!

So here we are all nice and clean, ready to get started. Mom was the holder and Dad was the distractor and photographer!

She started out by putting a sock-like thing over her head. Then she cut a space out for her mouth. Her eyes stayed covered the entire time.

Then she wet each piece of plaster and put it on Em's head. She used her hands to flatten it as much as possible so we could get a good quality mold.

After she had the top of the head done, we had to sit her up and hold her very tight. She didn't like it too much, but did very well. Then she did the plaster on the back and sides of her head. By this point, her head was very heavy so she had some trouble holding it up on her own, but she did great!

Finally, Mary pulled the plaster mold off and out came our adorable little peanut! The only time she cried during the entire 10 minutes was when Mary pulled the mold off. Can you believe it?

Mary said she had never had a baby that was so good. She does about 2 - 4 of these a week and she could not believe how good Em did. She said 'Oh my gosh!, you have the best baby'. We were like...yeah, we know! ha ha

After everything was done, we gave her a nice bath.

The band should be ready in about 8 days. Then she will wear it for 8 weeks, we will need to keep it on 23 hours a day. We are not looking forward to it, but we know this is the best for Em. Her head shape is just getting worse and worse, eventhough her neck strength is getting so much stronger.

Road Trip to Indiana

Kory took off Thu and Fri (YES!! You heard me right!!) and we headed down to Indiana for the weekend. We really wanted Emily to meet her great grandparents that live down there.

Here is Miss Em on our way to Indiana. Isn't she so cute???



We have a ritual of playing UNO with grandma and grandpa. Here Em is learning how to play. BAH-LOO!!!



We had to also take Em up in Kevin's tractor. Uh oh...I think she really likes it!!!




Here is she is also visiting great grandma Marion. We had a great time!!



Here is great grandpa and great grandma Miiller. Thanks for letting us come visit.


We got to see Uncle John, Aunt Cheryl, and Aunt Lola also. We went out to eat and Emily was such a good little girl. We did have to give her a suppository yesterday because the darn girl refused to poop! Don't know what we are going to do with her!!!

We fed her at 1200 today and then left Indiana around 1. She didn't wake up the ENTIRE car ride home!! We got home at 4:30 and she was still snoozing. Now that's a daddy's girl!