... dylan's plagio triumph ...

He has what?

So, Dylan is perfect. Right? Right. He's as cute as can be, he's a happy baby and got a great personality. So what's the big deal if he always likes to sleep on his right side. At least that's what I thought...

Bryan was in Europe on biz when I took Dylan to his 4 month well baby checkup. No big deal, right? I walked out of the appointment with a referrals to 4 specialists for all potentially very scary things. I was shell shocked. We learned that Dylan did not pass his hearing screen at the hospital when he was born and after the doctor examined him he said we needed to see an audiologist. During his exam he noticed some “cysts” on his eyes and referred us to a pediatric eye specialist. Then he diagnosed Dylan with something called torticollis which has to do with the neck – his inability to turn his head much to the left and extremely far to the right – so he reffered us to a pediatric physical therapist specializing in back and neck issues. The scariest thing was about his head. As I mentioned, Dylan sleeps his right side all the time and has developed a flat spot. We knew this, but thought it was a fairly common thing with newborns and tried not to be alarmed since we had discussed this with the pediatrician at the 2 month visit and he didn't seem concerned. In fact, he said things would likely get worse before they got better. Well they certainly did. The doctor was very alarmed at the 4 month appointment because he said it was markedly more pronounced than the last visit and is beginning to change the symmetry and shape of Dylan’s face (his right eye is beginning to push forward and his right ear is moving down). He thought it might be something other than plagiocephaly (aka flat head syndrome). He thought it could be craniosynostosis which is where the bones in the head fuse together improperly resulting in pressure on the brain and facial deformities. So he referred us to a neurosurgeon. A wha? A neuro-what? Yes, a neurosurgeon. I thought I was going to faint.

So, we’ve now had appointments with all of the specialists and have some promising news to share.

• He passed his hearing screen yesterday with flying colors.
• We went to Savannah to a pediatric eye specialist. Dylan does have some cysts on his eyes right around his pupil (they’re not cysts in the sense that we’re thinking of them – they don’t poke out of his eye. They’re growths within the eye). Fortunately, the doctor believes them to be benign and thinks they’ll go away as Dylan grows and won’t impair his vision in any way. We go back in 6 months to make sure he’s right, but he was confident in his diagnosis.
• We went to a pediatric neurosurgeon in Savannah, too. Dylan had a catscan so we took the pictures with us. He said his head looks fine and no signs of craniosynostosis … so no surgery. THANK GOD! He does however have plagiocephaly. And based on how advanced it is and how it’s beginning to move his facial features the doctor recommends that we get Dylan fitted for a special helmet ASAP. This helmet will help reshape his head and, hopefully, be a deterrent for him to continue to sleep on that side of his head. The helmet specialist that he recommended is in Atlanta so we’re trying to see if there is someone closer before making that appointment.
• We met with a physical therapist and confirmed that Dylan has torticollis. It likely developed in utero and is the reason he is always turning his head to the right. We are doing weekly physical therapy sessions and twice daily exercises/stretching at home.
  

Here are some links for more reading:
Plagiocephaly: http://www.plagiocephaly.org/what_is.htm

Torticollis: http://www.drhull.com/EncyMaster/T/torticollis.html

posted by the jaynes family @ 11:02 PM