Head Shaping Helmet

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Head Shaping Helmet

Postby babydust2me » Fri Apr 19, 2013 8:26 am

I know there was a thread for this a while back but I'm too lazy to look it up. Aren't there a few mommas on here that have had them?

My baby B Reagan was born with torticollis. That cleared up with PT but it left her with a very flat head. The pediatrician has been playing the wait and see game, but at their 9 month appointment he realized it wasn't really getting any better, even with her sitting up all day long and no longer sleeping flat on her head at night. We had to do a CT scan yesterday to rule out her skull plates already having fused together. They haven't, thankfully but her head shape is bad enough to need a helmet. We're going get fitted for it next week. I spoke with my insurance and thankfully the helmet itself will be covered.

I'm just totally clueless about what to expect. Will we have to see a special doctor to monitor her progress? How often does she have to get checked while she's wearing it? How long did your LOs have to wear it? Is it hard to keep clean? I work FT so my girls go to a sitter during the day. Will it be any trouble for my sitter? Did people stare at you in public? (I'd imagine this is most definitely going to happen. People already stare because we have twins!) I'm so overwhelmed and bummed out my poor little girl is going to have to wear a helmet. I'm sure it's going to bother me more than her. I guess the plus side is, she's just now trying to start crawling so I guess the helmet will protect against head bumps!
Cassidy (29) DH (30) TTC#1 since Oct 08

IUI#2 - BFP!
Morgan 3lbs13oz & Reagan 3lbs10oz born at 33 weeks after 3 years TTC
19 days in the NICU

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Re: Head Shaping Helmet

Postby hazelbazel » Fri Apr 19, 2013 7:38 pm

Yes, my Gianna had to wear one too. She was in her's from about 4 months old until about 7 months old. And really, I felt the very same way you do in the beginning, but it becomes very easy to use and maintain very quickly and you won't even notice it after a while. We did not have to see a special doctor but did have to see a special physical therapist that specialized in plagiocephaly. They took a mold of her head in order to make the actual helmet, and this was probably the hardest part of the whole thing because she had to stay still in order to do so. And she didn't like it much and cried a lot. :( But if I remember correctly in only took about 15 mins. Then they will call you back and fit the helmet to her. I believe you follow up with the physical therapist every week? I can't remember exactly, but it was often. They would make adjustments to the helmet as the head grew and changed shape. Once they find the head shape is within a normal range again, they will have your child stop wearing the helmet. As far as how long each child wears it, it just totally depends on how severe the flatness is and how quickly the head adjusts. I believe the older they are the longer they need to wear it because the head doesn't change shape as quickly. As for cleaning it, we just used alcohol to wipe it out once a day. It still yellowed but I was told that is normal. And your sitter should have no problem with it because they quickly learn to sleep with it on and everything. And if she needs to remove it for some reason its really easy to take on and off. And yes, you will get lots of looks in public!!! LOL! People are generally just curious and will ask you what it's for. Other's will assume you have a special needs child and will give you special treatment! (One lady let me skip a line at a carnival! LOL!) But like with the twins, no eye contact certainly helps!

There is a group I used to belong to through Yahoo groups called something like Plagiocephaly Moms or something. They were AWESOME and you will find all kinds of information on there and then some. One fun part is you get the decorate the helmet however you like! They have tons of fun ideas on that site. I just bought some good scrapbooking stickers from Michaels that were flowers and stuck them on. They stayed perfectly the whole time!

Let me know if you have any other questions. I know it's overwhelming but it goes quickly and once it's done their heads look amazing and you'll never look back again! Good luck!
DS conceived after many rounds of clomid, 5 IUI's and a vericocele repair- born 4/1/08
DD conceived naturally first try! - born 1/29/10
Boy/Girl Twins! Conceived after 3 months of trying, BFP month was a clomid cycle- born 7/8/13
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Re: Head Shaping Helmet

Postby hazelbazel » Fri Apr 19, 2013 7:44 pm

Here's my little Gianna with her helmet!

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DS conceived after many rounds of clomid, 5 IUI's and a vericocele repair- born 4/1/08
DD conceived naturally first try! - born 1/29/10
Boy/Girl Twins! Conceived after 3 months of trying, BFP month was a clomid cycle- born 7/8/13
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Re: Head Shaping Helmet

Postby babydust2me » Sat Apr 20, 2013 8:33 am

Thanks for sharing! Now that I've had a day to think about it and google like crazy, it seems like it's not going to be as bad as I'm expecting. The place I'm going to is Hanger Orthotics and according to their website, they don't actually take a mold of the baby's head, they have this high-tech scanner which seems way less traumatic than a mold. Did it take long for Gianna to get used to wearing it? Reagan is my more laid back baby so I think she'll do better with it than her sister would.

I didn't even think of using scrapbooking stickers to decorate it! I may have to head over to Michaels today and get some.
Cassidy (29) DH (30) TTC#1 since Oct 08

IUI#2 - BFP!
Morgan 3lbs13oz & Reagan 3lbs10oz born at 33 weeks after 3 years TTC
19 days in the NICU

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Re: Head Shaping Helmet

Postby GreekMythFreak » Sat Apr 20, 2013 3:02 pm

I'll get dani to come post, her twin boys had helmets for quite a while. She's a big advocate :)
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Re: Head Shaping Helmet

Postby Dani26 » Sun Apr 21, 2013 7:01 am

Here I am, finally! Sorry it took me so long to come reply..I had to wait until I was on a computer versus my phone.
Ok, my baby A, Braylen, was born with torticollis as well. He had significant flattening on the R side of the back of his head. Keegan, baby B, had multiple surgeries when he was a newborn and therefore spent more time on his back, plus HATED tummy time. So Braylen had plagiocaphaly and Keegan had Bracycaphaly. The boys were evaluated and fitted for helmets when they were 6.5 months old. There are different types of helmets, my boys wore StarBands and we saw a special OT that specialized and was trained in starbands and helmet therapy through our Children's Hospital. Our hospital also had the scanner (Star Scanner), versus the molds. The scanning process was very simple, you lay them in the machine and a red beam runs down the face and back up. They may have to do it a few times as babies tend to be squrimy and they must be absolutely still while it scans. Then we got to pick the color we wanted for the helmets, and they called us when they were ready. The inside of the helmet is made of a foam type material that they shave down as the head changes. So you go back monthly, the doctor does measurments (not with the scanner, just with measuring tape, etc). They leave the foam where they don't want the head to grow, and shave out the areas that they wish the head to grow into. My boys were in helmets for close to 8 months, but let me stress to you that this is NOT typical. We were the first case ever at our Children's hospital that stayed in helmet therapy past 1 year of age. Usually helmet therapy is about 3 months. Our boys saw such significant change that we decided to continue going until we weren't getting good change anymore. Normally once the baby hits 1yr, the head growth slows down and the soft spots have mostly closed so you don't get change with helmet therapy as much.
OUr experience with them was : They didn't bother the kids AT ALL until after they were one, then they were old enough to undo the velcro and try to take them off. They slept in them on the way home from getting them the first day! ( I was terrified they wouldn't sleep). They will gradually get them used to it..usually the first day they only have you leave them on for a short time, then the next day a little more, until you are up to 22 hours per day use. Cleaning them: they tell you to use alcohol pads on the foam inside each time you take them off. We did that, as is it helps kill any bacteria (they get really sweaty under there!), but once a day we took a soft bristeled tooth brush and some baby shampoo and scrubbed the inside, dried it with a towel and then set it in front of a fan to dry. It made them smell good again. As far as people staring: we found that most people thought they were adorable, and it does cause even more attention to your already attention drawing twins! The only rude stares we got were from OLD MEN, they'd look at my kids like they were freaks. A lot of people thought we only had helmets on them because we were afraid of them bumping their heads while learning to walk, lol, but it does really help with that! When my two got out of their helmets, they had to learn that bumping their head hurts and we had A LOT of goose eggs, because they'd never hurt when they'd bumped their heads before. It was def a learning curve for them. Your baby sitter shouldn't have to take the helmets off at all, unless they were to go swimming or something of the sort, but its really easy..unvelcro, wipe with alcohol, make sure its fully dry before putting back on. I have tons of pics, of the starscanner, etc if you have any more questions or would like to see let Greek know and she will holler at me! It's really not a hard experience, just an added step in day to day care! Baby won't mind, promise!
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Re: Head Shaping Helmet

Postby babydust2me » Mon Apr 22, 2013 6:19 am

I'm so glad to hear it didn't disrupt their sleep. I've been worried about that. Reagan can sleep all night but teething and any new developmental milestones interrupt her sleep so I was worried the helmet would as well.

After the first initial shock of hearing she'd have to wear the helmet, I've had time to get used to the idea and it helps to hear other parents say it's not a big deal.

Thanks so much for sharing your experience!
Cassidy (29) DH (30) TTC#1 since Oct 08

IUI#2 - BFP!
Morgan 3lbs13oz & Reagan 3lbs10oz born at 33 weeks after 3 years TTC
19 days in the NICU

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