Author Topic: Plagiocephaly/flat-head syndrome options  (Read 6538 times)

jeromedawg

  • Magnum Stache
  • ******
  • Posts: 2873
  • Location: Orange County, CA
Plagiocephaly/flat-head syndrome options
« on: February 24, 2016, 01:02:38 PM »
Hey guys,

So our kid has flat-head syndrome (plagiocephaly) at 6 months now. I think he started developing it around 3-4 months. Our friends said they were quoted around $11k for a special helmet that their kid would have to wear almost all the time to correct it. Our doctor will be referring us to a specialist for more information but also said that it is pretty cosmetic and doesn't affect brain growth, etc. Cosmetically on a scale of 1-10 for severity, the dr rates it an 8.

Have any of you dealt with this and tried to fix it? Did you have kids that grew out of it? I know it seems a little vain but it is kinda concerning as first time parents (despite the doctor's reassurance). Did any of you actually get the helmet?

« Last Edit: February 24, 2016, 01:28:08 PM by jplee3 »

COlady

  • Bristles
  • ***
  • Posts: 380
Re: Plagiocephaly/flat-head syndrome options
« Reply #1 on: February 24, 2016, 01:34:15 PM »
One of my twins has a pretty bad case of plagio. I took him to a cranial specialist at Children's Hospital. Both the pediatrician and the specialist assured me that a helmet was not needed and that his head would round out on its own. He is now a year next week and it is significantly better but still pretty pronounced. I am hoping it gets a lot better over the next year!

If you do research online it looks like helmets are generally a thing of the past and that children's heads round out the same with or without the helmet. I hope that's true! But I'm following as well....

jeromedawg

  • Magnum Stache
  • ******
  • Posts: 2873
  • Location: Orange County, CA
Re: Plagiocephaly/flat-head syndrome options
« Reply #2 on: February 24, 2016, 02:03:53 PM »
One of my twins has a pretty bad case of plagio. I took him to a cranial specialist at Children's Hospital. Both the pediatrician and the specialist assured me that a helmet was not needed and that his head would round out on its own. He is now a year next week and it is significantly better but still pretty pronounced. I am hoping it gets a lot better over the next year!

If you do research online it looks like helmets are generally a thing of the past and that children's heads round out the same with or without the helmet. I hope that's true! But I'm following as well....

Interesting! I hope that's the case as well. I'd feel pretty ridiculous spending that much money on a special helmet especially if it's not necessary!

little_brown_dog

  • Pencil Stache
  • ****
  • Posts: 915
Re: Plagiocephaly/flat-head syndrome options
« Reply #3 on: February 24, 2016, 02:13:20 PM »
I worked in a pediatric hospital - we saw plagiocephaly alot in the NICU babies.

Most of the times helmets are only required if the child has serious flattening and it is causing their facial features to look strange.
Typically babies who are hospitalized for long periods of time are most at risk due to the fact that they are in bed all the time. Many premature babies end up having toaster shaped skulls which can seriously impact their looks. Research is still being done to determine if there are any cognitive or developmental effects, but so far it does seem to be mostly aesthetic.

Plagiocephaly develops in term, healthy infants due to being on their back too much. It has become more prevalent after the back to sleep campaigns - it was less prevalent when parents frequently put babies down on their sides and tummies to sleep, because the baby wasn't always laying on the same spot. The best way to help prevent worsening, and to encourage a more rounded growth without intervention, is to really get the baby off the back as much as possible (when awake - babies should always be put to sleep on their backs!). This means propping the baby up, sitting them in a bumbo, carrying them, babywearing with an ergo or a carrier where there isn't pressure on the head, doing tummy time 5 times a day, etc. Basically, if baby is awake, try not to have them lying on the flat spot too often.
« Last Edit: February 24, 2016, 02:15:50 PM by little_brown_dog »

jeromedawg

  • Magnum Stache
  • ******
  • Posts: 2873
  • Location: Orange County, CA
Re: Plagiocephaly/flat-head syndrome options
« Reply #4 on: February 24, 2016, 02:31:21 PM »
I worked in a pediatric hospital - we saw plagiocephaly alot in the NICU babies.

Most of the times helmets are only required if the child has serious flattening and it is causing their facial features to look strange.
Typically babies who are hospitalized for long periods of time are most at risk due to the fact that they are in bed all the time. Many premature babies end up having toaster shaped skulls which can seriously impact their looks. Research is still being done to determine if there are any cognitive or developmental effects, but so far it does seem to be mostly aesthetic.

Plagiocephaly develops in term, healthy infants due to being on their back too much. It has become more prevalent after the back to sleep campaigns - it was less prevalent when parents frequently put babies down on their sides and tummies to sleep, because the baby wasn't always laying on the same spot. The best way to help prevent worsening, and to encourage a more rounded growth without intervention, is to really get the baby off the back as much as possible (when awake - babies should always be put to sleep on their backs!). This means propping the baby up, sitting them in a bumbo, carrying them, babywearing with an ergo or a carrier where there isn't pressure on the head, doing tummy time 5 times a day, etc. Basically, if baby is awake, try not to have them lying on the flat spot too often.

Yea, we just got an exersaucer and also have a door jumper that we put him in (he loves both). He doesn't like sitting for extended periods of time (and can't prop himself up yet) and definitely doesn't enjoy tummy time that much. He loves standing though. As far as being on his back, we try to keep him off it as much as we can. When my parents were helping watch him a month ago, it probably didn't help as I think they left him on his back a majority of the time :(

Petuniajo

  • 5 O'Clock Shadow
  • *
  • Posts: 89
  • Location: Southeastern US
Re: Plagiocephaly/flat-head syndrome options
« Reply #5 on: February 24, 2016, 03:00:18 PM »
My little guy had probably mild-medium case. He did a little bit of rotating in the birth canal, and then the resulting stiff neck made it so he really only turned his head one direction, and thus rested/slept on that spot all the time over the first couple of months. The doctor prescribed lots (and lots) of tummy time as well as babywearing (instead of strollers, which we were already doing) to help him stretch his neck out and get him off that flat spot. Worked beautifully--he's 4 now and you can't see any flatness at all.

I'm not sure helmets are entirely a thing of the past (In the past couple of years I've known 3 babies with helmets, and at least 2 of them I know it was due to plagiocephaly), but I think helmets are being prescribed much, much less often.

GhostSaver

  • 5 O'Clock Shadow
  • *
  • Posts: 63
Re: Plagiocephaly/flat-head syndrome options
« Reply #6 on: February 24, 2016, 03:31:25 PM »
Our kid really liked to sleep on one side of her head when she was little. She is a good sleeper, so she is sometimes in the same position for many hours. We saw the specialist and he wrote a scrip for the helmet. She was about a 6/10 on the flatness scale at 5 months. We never got the helmet.

She is now 11 months. Her head has rounded out as she has aged. I used to go into her room and try to push her head off of the flat spot once she was asleep. Now she has decided she prefers to sleep on her stomach. I am sure that this has helped.

You can still notice the flat spot if you look for it, but I'm sure it'll continue to improve and she will grow some hair. I don't have any regrets about our choice to go helmet less.

jeromedawg

  • Magnum Stache
  • ******
  • Posts: 2873
  • Location: Orange County, CA
Re: Plagiocephaly/flat-head syndrome options
« Reply #7 on: February 24, 2016, 04:53:09 PM »
I'm just concerned since our doctor rated his pretty severely. Now my mom is getting all in on the action and telling us stuff like "just get it regardless [of what it costs]" and "I'm afraid of how this could affect his self-esteem" - this coming from a 40~ year teacher and school administrator :T

little_brown_dog

  • Pencil Stache
  • ****
  • Posts: 915
Re: Plagiocephaly/flat-head syndrome options
« Reply #8 on: February 24, 2016, 05:52:38 PM »
I'm just concerned since our doctor rated his pretty severely. Now my mom is getting all in on the action and telling us stuff like "just get it regardless [of what it costs]" and "I'm afraid of how this could affect his self-esteem" - this coming from a 40~ year teacher and school administrator :T

I know helmets are still used for moderate to severe cases...I suspect if your child is rated an 8 they might recommend it to be on the safe side. I would imagine that insurance would cover it though, it would be considered a mandatory medical/orthopedic device. Personally, as someone who has seen kids with bad plagiocephaly, if a specialist recommended using a helmet I would probably get it unless the bill was going to be a serious hardship. A baby's head will normally adjust in mild cases, but if your kid is rated as severe, it might be worth it to try everything in your power to ensure that it reverts to a normal shape.

use2betrix

  • Handlebar Stache
  • *****
  • Posts: 1657
Re: Plagiocephaly/flat-head syndrome options
« Reply #9 on: February 24, 2016, 06:13:37 PM »
I had a bad flat spot as a baby and I was put through scans and stuff to make sure I was ok. As others mentioned, it came back to normal over time.

bogart

  • Handlebar Stache
  • *****
  • Posts: 1045
Re: Plagiocephaly/flat-head syndrome options
« Reply #10 on: February 24, 2016, 06:26:09 PM »
I have no insights or advice whatsoever, but just wanted to say I'm sorry you're needing to deal with this condition and decisions -- it's so difficult to see our little ones in need of something to have to make decisions about how best to provide it. 

josstache

  • 5 O'Clock Shadow
  • *
  • Posts: 99
Re: Plagiocephaly/flat-head syndrome options
« Reply #11 on: February 24, 2016, 06:32:32 PM »
My kid had this, and at one point it looked to be quite severe.  Fortunately, it was symmetrical (the back of the head rather than off to one side), so it did not affect her facial features as far as I could tell.  She's 13 months old now and her head shape looks far more normal.  Her having more hair back there also contributes to obscuring the shape.

I looked at helmets as well, but everything I read indicated they weren't very effective, and seem to only be used much in the US/UK.  If other developed countries aren't behind an expensive, ineffective medical intervention for children, I tend to be skeptical.

Allie

  • Handlebar Stache
  • *****
  • Posts: 1677
Re: Plagiocephaly/flat-head syndrome options
« Reply #12 on: February 24, 2016, 06:40:37 PM »
My son had torticullis (sp?) so he always looked to one side.  He had just settled into a comfy place when he was developing and his head stayed turned in one direction long enough to effect the muscles in his neck.  We did stretches and all the recommended stuff to get him to look the other way, but he was having none of it.  The pediatrician recommended, and a doctor family member seconded, that we not use a helmet because the research didn't back it up as something that made a significant difference in head shape long term.

He ended up with a significant offset flat spot and one ear that is much further forward than the other.  With hair you can't tell at all.  This may be a problem if he has to wear glasses, goes bald at a young age, chooses a sport that involves shaving his head, or wants to get a head tattoo.  Otherwise, no one will ever be able to tell.  But, it did seriously worry me when he was a baby and bald. 

ETA:  he's almost 5 and no one has asked about his head since his hair grew in.
« Last Edit: February 24, 2016, 06:42:28 PM by Allie »

jeromedawg

  • Magnum Stache
  • ******
  • Posts: 2873
  • Location: Orange County, CA
Re: Plagiocephaly/flat-head syndrome options
« Reply #13 on: February 24, 2016, 06:53:53 PM »
I'm just concerned since our doctor rated his pretty severely. Now my mom is getting all in on the action and telling us stuff like "just get it regardless [of what it costs]" and "I'm afraid of how this could affect his self-esteem" - this coming from a 40~ year teacher and school administrator :T

I know helmets are still used for moderate to severe cases...I suspect if your child is rated an 8 they might recommend it to be on the safe side. I would imagine that insurance would cover it though, it would be considered a mandatory medical/orthopedic device. Personally, as someone who has seen kids with bad plagiocephaly, if a specialist recommended using a helmet I would probably get it unless the bill was going to be a serious hardship. A baby's head will normally adjust in mild cases, but if your kid is rated as severe, it might be worth it to try everything in your power to ensure that it reverts to a normal shape.

That's what I hear. The pediatrician referred us to a specialist but my wife contacted our insurance and they said this specialist isn't in-network. In fact, they looked and said there are no specialists in-network within our area...!! That seems hard to believe. We're in SoCal and on the Anthem BlueCross HSA-silver plan. My wife also asked if the helmet would be something that's covered and they said it's not. Unless they were mistaken in what they were telling us, it sounds like I possibly didn't make a good choice as far as the medical plan is concerned :( Plus, the doctor is saying it's only cosmetic so it isn't something that would be considered "mandatory"

okits

  • Walrus Stache
  • *******
  • Posts: 8683
  • Location: Canada
Re: Plagiocephaly/flat-head syndrome options
« Reply #14 on: February 24, 2016, 07:34:41 PM »
The best way to help prevent worsening, and to encourage a more rounded growth without intervention, is to really get the baby off the back as much as possible (when awake - babies should always be put to sleep on their backs!). This means propping the baby up, sitting them in a bumbo, carrying them, babywearing with an ergo or a carrier where there isn't pressure on the head, doing tummy time 5 times a day, etc. Basically, if baby is awake, try not to have them lying on the flat spot too often.

Can you put some serious time and effort into little_brown_dog's suggestions, and see if it makes a significant difference?  I think it's tempting for parents to just leave an infant in a swing/bouncer/car seat (heck, baby is content and you are tired), but get down on the floor with him for tummy time and really praise, encourage, and engage him (I get the feeling lots of babies dislike tummy time, so he's not unusual for not liking it).  Baby wear or carry him places.  Supervise him sitting in a high chair (give him cool stuff to play with, like plastic cups and dishes, or very runny puréed food he can taste, mash around, and make a mess with.  :)  We have a play mat our DD used to wiggle around on, moving around it she could press a squeaker here, push a musical/light button there, grab a textured piece meant to draw her interest.  It helped encourage her to creep/crawl and stay on her tummy.  We sat her on one of our laps and read to her a ton.

I would do all this first (apply effort) before throwing money (potentially $11k!) at the problem.

Tom Bri

  • Pencil Stache
  • ****
  • Posts: 640
  • Location: Small Town, Flyover Country
  • More just cheap, than Mustachian
Re: Plagiocephaly/flat-head syndrome options
« Reply #15 on: February 24, 2016, 07:36:54 PM »
In nursing school, they told us to have the babies on their tummies while awake, and sleeping on their backs, to reduce this.

jeromedawg

  • Magnum Stache
  • ******
  • Posts: 2873
  • Location: Orange County, CA
Re: Plagiocephaly/flat-head syndrome options
« Reply #16 on: February 24, 2016, 08:13:18 PM »
The best way to help prevent worsening, and to encourage a more rounded growth without intervention, is to really get the baby off the back as much as possible (when awake - babies should always be put to sleep on their backs!). This means propping the baby up, sitting them in a bumbo, carrying them, babywearing with an ergo or a carrier where there isn't pressure on the head, doing tummy time 5 times a day, etc. Basically, if baby is awake, try not to have them lying on the flat spot too often.

Can you put some serious time and effort into little_brown_dog's suggestions, and see if it makes a significant difference?  I think it's tempting for parents to just leave an infant in a swing/bouncer/car seat (heck, baby is content and you are tired), but get down on the floor with him for tummy time and really praise, encourage, and engage him (I get the feeling lots of babies dislike tummy time, so he's not unusual for not liking it).  Baby wear or carry him places.  Supervise him sitting in a high chair (give him cool stuff to play with, like plastic cups and dishes, or very runny puréed food he can taste, mash around, and make a mess with.  :)  We have a play mat our DD used to wiggle around on, moving around it she could press a squeaker here, push a musical/light button there, grab a textured piece meant to draw her interest.  It helped encourage her to creep/crawl and stay on her tummy.  We sat her on one of our laps and read to her a ton.

I would do all this first (apply effort) before throwing money (potentially $11k!) at the problem.

My wife tries as much as she can (esp being at home). She'll try to keep him up-right or on his tummy. We have a door-hanging jumper that the doc said would be good for this. And also recently got an exersaucer from our friends to keep him in and sit him up. If we put him on his tummy, he'll tend to just flip over onto his back after a while. From what I hear, it just sounds like some kids hate being on their tummies, period, and usually those are the ones who will go through a short or non-existent crawling phase. Anyway, if we try to keep him engaged on his tummy for extended periods, he'll just wail and cry and won't stop until we stand him up or carry him around. Our doc was concerned about the flatness back in month 3-4 when we pointed it out and advised us to do as much tummy time as we could. And we did... of course, I feel like my parents caused a big setback when they were helping watch him as they would keep him on his back most of the time. This surely didn't help.

I'm just not sure what to do now. A lot of people keep reassuring us that it will self-correct etc. I think what is most confusing is what people consider the "severity" level of his flatness in determining whether or not he really should have a helmet or if it will self-correct. Seems this is yet another one of those watershed issues to where there are tons of ppl in the "buy a helmet it helps for sure" camp and tons of ppl who say "don't waste your money it won't help"

tweezers

  • Stubble
  • **
  • Posts: 187
Re: Plagiocephaly/flat-head syndrome options
« Reply #17 on: February 25, 2016, 10:17:57 AM »
My nephew had this (back of his head so no effect on his facial features).  He wore that helmet religiously from 5 months until he was a year and my brother is unconvinced that it did anything as his head seemed similarly flat on his first birthday.  He's nearly 4 now and its rounded out much more, and along with a full head of hair any flatness is undetectable.

Good luck....its a tough place to be decision-wise with no/little insurance coverage for it.

sjc0816

  • Stubble
  • **
  • Posts: 246
Re: Plagiocephaly/flat-head syndrome options
« Reply #18 on: February 25, 2016, 12:57:14 PM »
My son wore a helmet for 9 months. From age 3 months to 1 year. He was sucked out of the birth canal with a vaccuum (severe heart decelerations and no time for a c-section)...and it did some damage to his neck. He literally could not turn his head to the right side. We started physical therapy at 2 months and eventually it was corrected.

From what I understand, there are two types of helmets. One, is simply a mold that protects the head from further flattening and allows the head to round out naturally as the baby grows. The second helmet actually applies pressure to try and re-shape the head. We went with the first option - it was much less invasive.

My son's head was moderately bad...and his eyes and ears were starting to fall off center. He was extremely colicky...so I literally carried him for 12 hours a day -- so this isn't just a problem with babies who are lying on their back all day....my son's issues happened just from sleeping and being unable to move his head.

This was my first baby and it was really upsetting...everything we went through his first year of life. But, he is TEN now....his head is probably 95% perfect and he's super cute (and awesome) ;)

So, whatever decision you make.....it will be OK.  Maybe get some other opinions if you haven't already....be aware of all of your options and make an informed decision.

La Bibliotecaria Feroz

  • Magnum Stache
  • ******
  • Posts: 4366
Re: Plagiocephaly/flat-head syndrome options
« Reply #19 on: February 25, 2016, 02:27:14 PM »
I don't have experience with this--I just want to say that you sound like you're having a dreadful time with this baby! I mean, I'm sure he's adorable and you love him. You just seem to be having bad luck in a lot of ways.

My only useful suggestion is if you use a stroller, you could try using a baby carrier more often so he's not lying on his head in the stroller. Good luck!

jeromedawg

  • Magnum Stache
  • ******
  • Posts: 2873
  • Location: Orange County, CA
Re: Plagiocephaly/flat-head syndrome options
« Reply #20 on: February 25, 2016, 03:49:01 PM »
I don't have experience with this--I just want to say that you sound like you're having a dreadful time with this baby! I mean, I'm sure he's adorable and you love him. You just seem to be having bad luck in a lot of ways.

My only useful suggestion is if you use a stroller, you could try using a baby carrier more often so he's not lying on his head in the stroller. Good luck!

lol it has gotten better that's for sure. but yea, from the breastfeeding woes, to acid reflux, to all the allergies, and with his head. It has been a bit crazy. I guess these things are kinda normal for us now. Maybe the next kid will be much easier in comparison *knock on wood*

My wife has been trying to get him into the ergo more often. But most of the time we're just lazy and leave him in the carrier between the car and stroller. We don't go out all that often though (and if we do it's usually not for a very long time in the car), so I don't think that's the biggest concern.

jeromedawg

  • Magnum Stache
  • ******
  • Posts: 2873
  • Location: Orange County, CA
Re: Plagiocephaly/flat-head syndrome options
« Reply #21 on: February 25, 2016, 06:00:30 PM »
So the $11k our friends quoted was a huge exaggeration - not sure where they pulled that number or if they went to some specialist who was really trying to rip them off. But it seems $2000-$4000 is more the range for these helmets to be in. One of my wife's friends, whose daughter had flat head, opted to do the helmet treatment and spent probably around $2500 - she has no regrets about doing it and says it helped a lot. And that's the thing, per the research of that one study, if she hadn't used the helmet would the head have rounded out on it's own? In other words, is the helmet more or less of a placebo? It's really hard to know the answer and it doesn't seem like much research or many studies have been done to prove or prove otherwise.

At the end of the day, it's not as much as we were expecting which I guess is a good thing. So we may try it as that seems like a 'reasonable' amount to pay. We were quoted around $2800 over the phone - the specialist's assistant told us that the insurance may cover it if the specialist deems it medically necessary. I have a feeling she won't though since it really doesn't seem *that* severe. But in that case, we were told that our insurance *may* provide a contracted/subsidized rate which would get it to be even less than $2800. We'll see how things go

BigBangWeary

  • Stubble
  • **
  • Posts: 117
    • The Great Canadian Housing Bubble Co.
Re: Plagiocephaly/flat-head syndrome options
« Reply #22 on: February 28, 2016, 01:21:52 AM »
We went through this with our son. We did our research and talked to a lot of doctors and were advised not to use a helmet. We just made sure to do a lot of belly time and the necessary physio. We were a bit nervous at first, but he just turned 2 the other day and you cannot see it at all. He is a handsome fellow if I do say so myself.

green daisy

  • Stubble
  • **
  • Posts: 107
Re: Plagiocephaly/flat-head syndrome options
« Reply #23 on: February 28, 2016, 02:28:27 AM »
Our friends went through this for both their kids.  They did the helmet both times but their insurance covered it.  I remember that they said that if the insurance wouldn't cover it, there was some sort of charitable organization they were planning on applying to that had grant money to pay for the helmets.  They contacted this organization and were told that they had excess funding because hardly anyone knew about it to apply.  I'll try to Google search for you.  They are more like friends of friends, so I heard this info second hand.  I'm hoping it's accurate. 

We went through a lot of similar things with our son.  Reflux, colic (he cried for hours...I went 4 days in a row once without a shower), multiple severe food allergies.  From age 2-4, he had multiple bouts of pneumonia, chronic vomiting, and some hospitalizations.  He's 7 now and an amazing kid.  He still has all the food allergies (and asthma), but they're managable and he's very healthy otherwise.  You get used to living this way.  I don't remember what life was like before.  But it was a tough road until he turned 5. 

jeromedawg

  • Magnum Stache
  • ******
  • Posts: 2873
  • Location: Orange County, CA
Re: Plagiocephaly/flat-head syndrome options
« Reply #24 on: March 01, 2016, 03:36:13 PM »
Quick update but we went to two different specialists and, as my ped friend anticipated they would, both recommended the helmet. He likened it to "asking an orthodontist if you need braces" haha

We're trying to see about making an appointment with a neurologist to get a second opinion but it seems like a lengthy and also costly process even to do that. Our local children's hospital needs a neuro intake form + medical records and may charge anywhere from $100-$400+ depending on what is diagnosed/discussed during the first visit. On top of that, we still need for our primary ped to formal write a referral for a neurologist.

I'm just wondering if there's an easier way to do this if all we want is a second opinion :T

jeromedawg

  • Magnum Stache
  • ******
  • Posts: 2873
  • Location: Orange County, CA
Re: Plagiocephaly/flat-head syndrome options
« Reply #25 on: March 01, 2016, 05:42:19 PM »
Our friends went through this for both their kids.  They did the helmet both times but their insurance covered it.  I remember that they said that if the insurance wouldn't cover it, there was some sort of charitable organization they were planning on applying to that had grant money to pay for the helmets.  They contacted this organization and were told that they had excess funding because hardly anyone knew about it to apply.  I'll try to Google search for you.  They are more like friends of friends, so I heard this info second hand.  I'm hoping it's accurate. 

We went through a lot of similar things with our son.  Reflux, colic (he cried for hours...I went 4 days in a row once without a shower), multiple severe food allergies.  From age 2-4, he had multiple bouts of pneumonia, chronic vomiting, and some hospitalizations.  He's 7 now and an amazing kid.  He still has all the food allergies (and asthma), but they're managable and he's very healthy otherwise.  You get used to living this way.  I don't remember what life was like before.  But it was a tough road until he turned 5.

Thanks! Yes, please let me know if you come across the name of the organization. So far I've stumbled across http://shareasmile.org/ but that's about it.