Helmet Free! (or at least during the day anyway...)

After only 3+ months in the helmet (and 5 weeks in the wrong one!), I never dreamed I'd be writing this. You see, Ian was a little late getting in his helmet. According to the neurosurgeon, the ideal age to "helmet" (is that a verb?) kiddos is between 4 and 6 months. Their head is most "moldable" at this stage, plus they are going through grow spurts like crazy, which make it easy to get significant movement of the skull plates back to where they need to be. Ian started at about 7 ½ months, and I truly believed this would cause us to be closer to the 6 month mark of that original 3-6 month estimate for time in the helmet.

Plus, the stinker doesn’t seem to want to grow. He’s not a big fan of eating … not that he doesn’t like food, it’s just that he would rather do just about anything else except eat. Watch his brother run around like a crazy boy, crawl around and explore the house, inspect everything there is to see on a kitty’s face, tune in like a zombie to Dora The Explorer - you name it. And in general, I wouldn’t really be that concerned. Except for the fact that there’s the tiny little issue of the helmet. If he doesn’t grow, then his head doesn’t grow either, and nothing changes about his head shape. The helmet essentially counts on the growth to be able to “redirect” it to the right spot.

So imagine our surprise when we discovered yesterday that even though we didn’t get any significant growth in the circumference of Ian’s head, he DID still have some improvement in his asymmetry. You may remember that he started out at 9mm difference – he’s now down to 4mm! According to the orthotist, you could maybe even call it 3mm – he was being conservative in rounding up. This doesn’t seem like a big change – 1mm is SO tiny, and yet his head visually LOOKS a lot better! Not sure why, but it just looks more balanced and even.

So, here’s the great news … Ian can now wear his helmet only for the 10 hours or so that he sleeps at night! During the day, he is so active that he doesn’t spend any time (except for short naps) laying on his head, so there is no real danger of regression. Also, kiddos typically grow at night (weird…), so even as he grows over the next couple of months, we’ll maybe still see some further correction. Our plan is to keep it on him at nighttime until he grows out of it, which will probably be around his first birthday or so. He actually sleeps better with it on (go figure?), so hopefully this shouldn’t be a problem.

We visit the neurosurgeon for a follow up visit Wednesday morning, so I’ll be curious to hear what she thinks of the progess…

Ian sans-helmet

I was reminded this morning (thanks, Michelle!) that not many people get to see Ian without his helmet, except us in the evenings for bath and play time. He is just so stinkin' cute that I had to share ....

2 months down ...and finally an update!

Whew! Sorry it's been so long since I've posted an update ... apologies to those checking in only to find no new information the last couple of weeks.

LOTS has happened since my last post. The biggest piece of news is that we've seen some correction! In order to determine the amount of asymmetry of a head, measurements are essentially taken diagonally of the head from the sides of each forehead to the backs, like the white lines in this picture:










The difference between the two measurements is the asymmetry. Ian's asymmetry originally started at 9mm ... at last measurement about a week ago, we were down to 5mm - YEAH!

In fact, our orthotist said that if Ian had just walked through the door for a consultation, they would not even recommend putting him in a helmet. But since we're already doing it and he's adapted so well, we're planning to stick with it for a while to see what will happen. Our original goal in this whole process was to minimize the risk that he might have issues related to the skull asymmetry (sinus problems, TMJ, vision problems, etc.) down the road, so it seems like the right thing to do to keep going as long as the helmet fits.

So, now back to what's changed....
After Ian was in his helmet for 4 weeks, we went in for an adjustment. The helmet seemed like it had quite a bit of room in it, and so I’d asked at several other adjustments when they expected that to change. The answer I kept receiving was that he would eventually grow in to it and it would grow tight. 4 weeks later … the helmet was still loose and measurements (at my begging … they did not seem to think they were necessary) confirmed that nothing had changed in the size and shape of Ian’s head. This didn’t really surprise me much, because how in the world could it be “reshaping” his head if it didn’t even fit snug enough to redirect growth?

I had some suspicions after doing some research just after he received his helmet that we might have some better options out there. But I felt stuck. Riley had referred us to this orthotics company, we had met others that had used them with good results, insurance had already approved and paid the claim, etc. I felt like I had to give it a chance. But 4 weeks later, with no improvement, my patience had run out…

It was then that I had a 30 minute phone conversation with another orthotist. I explained our situation and told him that I didn’t have any reason to believe that the helmet Ian was wearing wouldn’t eventually work, but I wanted a second opinion. He was very concerned that the helmet Ian had was not FDA approved (the list is pretty short of those approved…and shouldn’t they be? They are remolding a child’s skull!) and the fit seemed off. After going in for a consultation (we were there about 2 ½ hours), they offered to make us another helmet for Ian. They took a computerized “scan” of his head and this was used to make a foam model of his actual head dimensions. Then, the helmet is fabricated in one of 5 FDA-approved facilities to the exact specifications of his skull.

When we received the new helmet one week later, the difference was like night and day. I know it probably seems ridiculous to most who didn’t interact with Ian every day, but it fit so much better – and the best part (according to Ian) is that there is no chin strap.

One week after Ian got his new helmet, we went back in to make sure things were fitting correctly and there were no spots rubbing on his head. I laughed as I told the orthotist that I thought his head was actually looking better already, but I was fairly certain it was my mind playing tricks on me. He measured and …VOILA … from 9mm to 5mm!

We’re not expecting that type of change every time we go in, but it was definitely a good start. Our next appointment is in three weeks on April 13th. Then we go back to see the neurosurgeon that originally recommended the helmet a couple of days later on April 15th.

We’re really hoping that Ian can graduate by the end of May. We have plans for a 7 day Disney cruise to the Western Caribbean and it would be really nice to not have to wipe the hoards of sweat off his head that I know will result from warm weather and sun.

If you’re actually still reading this, thank you for your dedication! We appreciate all of the love and support so many have offered throughout this. To know so many prayers are being offered for Ian is truly amazing. I’ll update again as we know more =)

It's just a hat

OK, so in the end it's just a fancy, expensive hat, right? We put hats on our kids to go outside in cold weather or baseball caps on for sports (or just because they're cute). So why is it so hard for us to put this kind of hat on him? Oh yeah, because we CAN'T take it off. When I kept telling myself before this adventure started that this was going to be more traumatic for me than him, I didn't realize how much. It's REALLY hard for me to put it on him. Not just because it doesn't go on very easily or because he's not a big fan of it going on and off, but because when he has it on, I feel like it's really difficult to snuggle up to him. There is about a 1/4 inch of plastic and 1 inch of foam in between us, and it makes it hard to find a spot to nuzzle or kiss. I find that I'm already missing the smell of his hair. So I'll just keep reminding myself that when we're all through, this will have worked and progress will have been made. And in 3 months, his hair will still smell great on top of his symmetrical head.

Caleb and the "sympathy helmet"

Caleb wanted to wear a helmet, too, just like his brother!








All ready to go!

So far, so good!

I can't believe that we're already on Day 5! We accelerated the wearing schedule just a little bit to build up time faster for two main reasons: 1) Ian seems to be going through a growth spurt and we want the helmet on as much as possible to redirect the growth; and 2) he has been tolerating it so well that it was easy to do.

In general, I keep wondering why it's been so easy for him. The orthodist told us that infants usually adapt fairly quickly and it just becomes part of who they are. I didn't believe him. So, I have been waiting for the other shoe to drop. For him to all of the sudden just start screaming while it's on. Or for him to start pulling and tugging at it. Or not want to sleep, or eat, or play. But none of these things are happening! He's not a big fan of it coming on or off because it doesn't open up quite wide enough on the sides for it to cleanly come over his head. So we have to kind of jimmy it on and off, but otherwise once it's on, he seems FINE with it. He just goes about his business playing and it really doesn't affect him much at all. He's even slept two nights (all night!) in it without any problems. So, I'm now going to stop holding my breath about it, give thanks to God that he's allowed Ian to adapt so well, and move on.

Ian went back to school today, and was all ready to have fun in Green Caboose with his awesome shirt on (see pic below). Can he get any cooler?

Getting used to how it feels ...

... and actually smiling! Hopefully a good sign.






And we're off and running.... since we didn't get home until so late in the day, we decided to put the helmet on only long enough to play for a couple of minutes before bed. On Thursday, we'll start a schedule of 3-4 hours per day, then Friday 6-8 hours, etc. until we build up to the full 23 hours. Ian is going to stay home from school to have time to acclimate on Thursday and Friday, even though his teachers there are so awesome that I know he'd be fine there. Ok, so seriously, how cute is he in that helmet? And the cool dude print? He totally rocks.

"Before" pictures

Here are my "before" pictures. Somehow the red hair makes everything so much cuter!

What in the world is plagiocepahly (flat head syndrome)??

Doctors are seeing more and more cases of positional plagiocephaly. Today, it affects one in 60 babies, compared with one in 300 in 1974. Parents typically notice that their baby has an oddly shaped head with a flat spot on the back or one side and that their child's facial features or ears are asymmetrical.

"While plagiocephaly is not life-threatening and doesn't affect brain development, it can lead to improper skull growth and permanently affect the symmetry of a child's face if it isn't treated properly," explains John Persing, M.D., a craniofacial surgeon at Yale–New Haven Hospital, in Connecticut.

Some infants are born with plagiocephaly because of cramped quarters or positioning in the uterus, while others develop it owing to torticollis, a tightening on one side of the neck muscles that causes a baby to favor looking in one direction over the other. Experts believe that the recent jump in cases, however, is the result of the "Back to Sleep" campaign introduced in the 1990s to reduce the risk of sudden infant death syndrome. While this program—which encourages parents to put their babies to sleep on their back rather than their stomach—has been widely credited with cutting the number of SIDS deaths by 40 percent, it's also led to an unfortunate side effect: plagiocephaly. Since an infant's skull is soft, it can easily be molded by external pressure from a firm mattress.

The great news for us is that this is completely treatable and Ian should go on to live a normal life with no problems resulting from it!

How do we fix it? Ian will wear a cranial helmet 23 hours per day for at least 3 months. We will take it off for 1 hour per day to give him a bath and give him a little of play time. The helmet does not hurt him, but it just might be uncomfortable for a little bit while he's getting used to it. It essentially works by "holding" in the parts of his head that they don't want to grow, and allowing room in the helmet to encourage growth in other parts. His helmet will have to be adjusted approximately every 2 weeks to make sure the fit is good and to account for growth, etc. After the 3 months, we'll return to Ian's neurosurgeon for an evaluation - if it appears like he's had growth and the symmetry has returned, we're done! If not, we keep going until it has (could be up to 6 months).