07.13.2015

Eleni’s Helmet

EJ got a cranial helmet to help fix her head shape over the next few months.  She has plagiocephaly (flattening of the side of the head), caused by torticollis (right neck muscles too tight, left neck muscles too stretched), which she got at birth from her terrible/long/traumatic delivery.  She actually had a lot of fluid under the skin on her head that took until about May to completely go away.  The fluid hid a little bit of the flatness, but we started noticing that it was flat when she was 6 weeks old (the same time as the hemangioma discovery!).  We saw a plastic surgeon when she was 6 weeks old and he said that her head would hopefully round out before she was 6 months old, but, if not, to come see him about getting a helmet at that time.  Well, we noticed the flat spot getting worse as time passed, so after talking to EJ’s pediatrician, he diagnosed her with torticollis and we’ve been taking her to physical therapy since April to stretch her neck and help her start turning her neck/head to both sides equally.  We also started doing everything we could to keep her off the right side of her head (re-positioning her), we stimulated her on the left side and we kept her out of all reclining seats such as the carseat, Mamaroo and Rock-n-Play as much as humanly possible.

She’s doing really well in physical therapy, but her head shape was bad enough that it didn’t self correct even with all of our efforts.  DG and I made the decision to get her into a cranial helmet to correct the shape.  We actually got the helmet on DG’s birthday (happy birthday to him!).  She’ll wear the Starband for 23 hours a day, with a one hour break to clean the helmet and give her a bath.  Right now, her head asymmetry is at 14 mm.  We need to get her down to 4 mm different before she can stop wearing the helmet, which the orthotist says will take about 3-4 months.  Obviously I hope it’s less than that, but I know that some kids have to wear them for even longer, so I’ll do what we have to do.

I did a lot of research on cranial helmets such as the Starband and Docbands and had a pretty easy time deciding that this was the best thing for EJ.  DG was a little harder to convince, initially concerned that it would hurt her, be too hot and that it wouldn’t work.  After listening to my research and seeing several before and after pictures on other blogs, he also agreed that it was the right thing to do.  It’s kind of like getting braces for your child–if EJ’s teeth are crooked we will fix them, so why not help her head shape?  It’s also not just about the flat spot on the right side of EJ’s head, but plagiocephaly can result in facial asymmetry, meaning that her ears, eyes and cheeks could be uneven with one side higher or more prominent than the other.

We eased EJ into the helmet over the past week and now she’s wearing it like a pro.  I don’t think she even knows it’s on!  It hasn’t affected her sleep either.  We now have a cute decal and a bow on it too!

EJ's head in April, the week we started physical therapy.

EJ’s head in April, the week we started physical therapy.

Happy as can be wearing her helmet for the first couple hours on Daddy's birthday.

Happy as can be wearing her helmet for the first couple hours on Daddy’s birthday.

EJ isn't so excited for a picture, but we got her a cute bow, monogram and flower stickers to decorate her helmet.

EJ isn’t so excited for a picture, but we got her a cute bow, monogram and flower stickers to decorate her helmet.

 

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