Wednesday, February 12, 2014

What's up with the Helmet?

It occurred to me the other day that I haven't written about Julian's helmet experience and some folks may not know why he is wearing it.  So let me tell you all about plagiocephaly and torticollis, which are Julian's two diagnoses.

J was born in July and all was well.  A week before his two month pediatrician appointment my mom asked me if I'd noticed the flat spot on Julian's head.  I brushed her off (and admittedly was annoyed that she even mentioned it - my child was perfect in my mind and I thought she didn't know what she was talking about).  I took a good look at the back of his head and realized that it was a tad flat but figured it would work out on its own.  Fast forward a week to his pediatrician appointment.  I didn't mention the flat spot (since I didn't think it was an "issue"), but sure enough, the pediatrician did.  She said it was a little concerning, and asked me if he looked both left and right or if he favored one side.  I hadn't noticed.  But from that moment forward, I realized that he ONLY looked to the left.  He was always favoring the left side and I couldn't get him to look all the way to the right.  Sigh.  Why is it that we don't notice things until someone points them out and then that is all we notice? How was it possible that I hadn't realized that he was doing this? Well the pediatrician gave us some simple exercises to do daily and said we'd reevaluate his head at his 4 month well visit.

2 months later and I knew that his head hadn't improved.  If anything, the flat spot was getting worse and his forehead was bulging out on one side a bit (that sounds worse that it looked like he had a bump on his forehead., ok, so maybe it was bad).  So I wasn't exactly surprised when our pediatrician referred us to Children's Healthcare of Atlanta to see an orthotist for his plagiocephaly (fancy name for flat head syndrome) to see if Julian was a good fit for Cranial Remolding.   

We went to CHOA a week later for Julian's initial scans which measure the diagonal length difference of his head as well as his ear position.  The normal range for the diagonal length is 0-6mm.  His measurement was 13.6mm which put him in the "moderate to severe" category.  We also learned that his ears were very asymmetrical, with one being further forward than the other. (Again, how had I not noticed this?!?) So they recommended we order a helmet and go forward with the cranial remolding.  We were told that we could wait and see if the flat spot corrected itself as he started sleeping on his stomach and spending less time on his back, but that they see the best results the earlier you begin and his time in the helmet should be minimized the earlier we begin.  I hesitated for a moment (to cry), but Mr. Cob and I decided to go ahead and proceed.  CHOA uses the Star Band brand of helmets, so we were able to choose a fun design for his helmet.  We decided that Julian's big brother would think the spaceships were neat so we went with the outer space themed helmet.

About to get scanned!
2 weeks later Julian's custom made helmet arrived and we met with Sara our orthotist to have it fitted (his head grew in the 2 weeks between the scans and the arrival of the helmet so they had to make adjustments).  He gradually worked up to wearing the helmet 23 hours a day over 4 days.  The first day I think he wore it for 2 hours, the next for 4, the next for 8, and then 16.  So now he wears it all day, every day, except for one hour in the evening when we give him a bath and clean the helmet.  So yes, he sleeps in the helmet.  He wasn't a great sleeper to begin with, so I'm not sure the helmet has made his sleep worse, but it certainly hasn't helped.

We go every 2 weeks for adjustments.  They make sure he doesn't have any "hot spots" and that his skin is not getting irritated from the helmet.  It keeps his head pretty hot and sweaty so we've had some issues with rashes, but it's nothing a little diaper cream won't fix.  They also told us to rub his head down in coconut oil to prevent any yeast infections from growing, so he often smells of coconut, which is better than the sweaty smell (and the diaper cream smell for that matter).  I'm told that we should be thankful that he's not wearing the helmet in the summer, because then he'd always be sweating and no amount of cleaning gets rid of that smell!  We clean the helmet every night with rubbing alcohol or his baby shampoo and a toothbrush (we were told we could try witchhazel which might help the smell even more, but haven't tried it yet).  It's a pain, but it's become part of our nightly routine.  I won't miss it when we're done though.

Hot spot - time for adjustments!
Every 6 weeks we go for progress scans.  He's almost had the helmet for 10 weeks, so we've gone for one progress scan so far (our next is February 28!).  His measurement went from 13.6mm to 6.4mm!  So we are 0.4mm away from being in the normal range!!!  You could tell the head shape was improving just by looking at his head when the helmet is off, but the scans confirmed this!  We're hoping he only has 2.5 more weeks in the helmet, but our orthotist didn't make any promises - it's possible he'll need to wear it longer, but maybe only at night while he sleeps rather than all day.  I'll be glad when we can say good bye to the helmet, but I'm so glad we went forward with it and didn't wait until he was any older.  If anyone else gets referred to an orthotist for cranial remolding, I would definitely recommend it, despite the cost and the fact that many insurances won't cover the expense.  Julian's head is almost round now and I am so surprised how quickly we've seen an improvement.  Apparently when they are so young, they grow quickly which causes the head to remold quickly as well. 

6 week scans - IMPROVEMENT!
While it was scary at first, this has been a very positive experience, and very few people have made comments about the helmet.  A man working at Costco is the only person who stopped me and asked why the baby was wearing a helmet.  He was very nice, but he honestly had no earthly idea why J was wearing the helmet.  Most people just stare and smile.  Some people just stare.  And that's OK.  I think they're just curious.  Little kids are the best - they come right out and ask about the helmet and ask me all about it.  Lukas' 3 year old classmates ask me all the time why Julian is wearing the helmet, it's very cute.  And I don't mind at all if people ask me about it - I'd rather you ask than wonder!  You can read more about cranial remolding here.

So that's half the story.  The other half is the torticollis, which often accompanies plagiocephaly but doesn't always and can occur without the flat head.  Torticollis "is a condition in which an infant's neck muscle is shortened causing the neck to twist."  More on torticollis here.  So we were referred to physical therapy to help stretch Julian's neck and correct his head tilt.  (Again, I never noticed the head tilt, but the physical therapist assured me his head tilted.  Great.).  So we were given 3 different stretch exercises to do with Julian 3 times a day - we fit this in in the morning before school/work, right when we got home from school and right before bed.  We were very strict about doing the exercises each day and within a week noticed a difference.  Within a month we could tell he was looking both ways and moving his neck with more ease.  At his follow up PT appointment a month ago, we were told his neck was doing great and that we didn't need to keep doing the exercises.  So thankfully that corrected quickly.

So what caused the flat head and tight neck?  No one has come out and said for sure - it's possible it started in the womb if he was in a tight position where his head was kinked.  There has been a rise in flat heads with the "back to sleep campaign" - SIDS has gone done (good), but flat heads have gone up (not great, but better than SIDS...) because babies are spending so much time on their backs.  I may not have done enough tummy time with Julian when he was first born and admittedly he was in his car seat often as we went about our day (he's a second child after all, so I wasn't nervous about getting out and about while he was little).  I've not dwelled on the why.  Thankfully it's nothing permanent and before long will be a thing of the past and J won't ever remember this time in his life.  So that's the deal with the helmet!  If you have any questions, don't be shy!


  1. I'm so glad to read this post. A friend shared it with me today after hearing that we just got a referral to CHOA for an eval. Reading all of this made me feel so much better and so much more comfortable heading into that appointment next week. Thank you for sharing.

    1. You are so welcome!! I still haven't written the follow up post-helmet blog, but he ended up wearing it 16 weeks and the final result is amazing! Good luck and please feel free to email me if you have any questions as you go through the process!!

    2. Thanks! He had his eval today and they put him in the moderate category so we went ahead and ordered the helmet. They're thinking it'll be 3 to 4 months for him. I can't tell you how much easier this appointment was because of being able to read your experience.