New to Plagiocephaly (Flat Head)

Hi,
I posted this question on the Health Issues and Special Needs Forum but got no response. I've seen a few of you talk about helmets so I'm hoping you can help me.

We just got back from the boys 6 month well visit. They both have mild flattening on the left side and she said if we wanted to do something, now is the time. They both had torticollis which is now gone. She referred us to a plastic surgeon and I'm waiting for them to call me back.

She said that 2 years ago she would not even think about sending us to a specialist but is leaving it up to us since so many parents now a days are wanting their children's heads to be pefectly round. :huh:

So here are my questions:

1. If your child has plagiocephaly, how severe is it?

2. At what age did they get their helmet?

3. How long after diagnosed did it take to get their helmet?

4. How long (months) did they have to wear it?


She made it sound like a vanity issue and not really a health issue. If it's so mild that after their hair grows in nobody will notice it, why go through all the pain (and cost) of a helmet?

On the flip side, she said if not corrected it might cause jaw problems later in life.

We will go on the advice of the specialist but I just wanted to get some idea of what is involved in the process.

Thanks!

 

I hope some more experienced folks chime in, but here is what I know from my DS's plagio. We were referred to a pediatric plastic surgeon at the 4 month well baby visit. It took a month to get in with him. During that month, I did some positioning work with him, well actually, a lot of positioning work! By the time we had the ped plastic surgeon appointment, DS's head was so improved he just looked at it and said he didn't require a helmet or band. (He didn't even take measurements.) He said if we were worried about his head not being perfectly round, that we could always do the helmet or band. Since it was just a vanity thing and since the flat spot was hardly noticeable, we decided not to do anything. DS is a year old now, and you could never tell he had such a bad flat spot. I wouldn't say his head is perfectly round, but it's certainly not misshapen.

I'd keep the appointment with the ped plastic surgeon and see what the expert advice is. Depending on the severity of the flatness and whether any part of the skull is bulging and whether the features are misaligned, it may be just a vanity thing or it may be medically necessary.

For positioning work, I changed the way I held him while giving him bottles, I used a rolled up receiving blanket behind the shoulder of the flat side in swings, bouncy chairs, etc. I also used a sleep positioner that allowed me to position him on the non-flat side. (DS also had torticollis so a lot of this also helped strengthen and stretch the tight side of his neck too.

 

I'm going to PM a mod because I really think this info should be in the FY handbook as many people deal with it. We can share our stories and pictures.

We are currently in the process of starting treatment. Annelise has had a questionable head shape since before she was born. At our 18 week ultrasound, the doctor said that she had a strawberry shaped head which was possibly indicative of Trisomy 18. We were sent for a more detailed ultrasound with a Peri. Fortunately, the Peri said that she was a healthy baby. Her head shape was a little off, but not a chromosomal problem. At the same time, they noticed that I was having a lot of contractions and preterm labor. I was only 19 weeks, so I was immediately put on bed rest. I always say that Annelise's funny shaped noggin saved both my babies because we may not have known about the PTL until it was too late if we hadn't been sent for that extra ultrasound.

Anyway, the girls were born at 30 weeks. Annelise was Baby A and she was jammed head down in my pelvis and was very low the whole pregnancy. She also had low amniotic fluid for a bit due to anti-contraction meds I was on. When she was born her head was a little differently shaped, but didn't look "abnormal" either. As she grew, she started to develop a flat spot on the back of her head (partially due to reflux and being strapped on her back in a Danny Sling) which added to the head shape issue she was born with. The pediatrician kept saying we should just keep an eye on it. At 5 months he agreed it was time to see a specialist. We went to see the craniofacial specialist at Gillette in Minnetonka, MN just before she turned 6 months old. They said she qualifies for a helmet, but her head is a bit too small yet. We are heading back on July 21 to have her head scanned/measured for the helmet. We'll get the helmet the following week, I think. We were told she'd wear it for 23 hours a day for 3-4 months.

I will have more information in a couple of weeks and will share some pictures after she gets her helmet.

There is a yahoo group about plagiocephaly that is very active. Try this link for the Yahoo group. I'll warn you though, I bet I get 30 messages a day from them.

 

Hi Judy-

I dont have any experience with Plagiocephaly with my two, but both of my cousins twins were in a helmet for 6-8 months. It made a lot of difference with one and there was little to no movement with the other. However now that they are both 2.5 YO you dont notice it with either one of them.

I am sure that you will get alot more info and more personal stories about plagio here. I also did a search here in FY to give you lots of info if you have not looked it all up already. Best of luck to you with your decision. :hug99:

 

Athough neither of my twins have suffered from this, my sister had this issue with both of my nephews (they are now 2 yrs, and 9 months). With the older one, the doctor told her that it would correct itself, and unfortunately, it didn't. She moved when he was just 6 mo. old, and it was not followed up on by the new doctor. She just recently switched doctors again, and he said that he should have had a helmet. He ordered a CAT scan for him at age 2, to make sure that the flatness (also on the back left side) was not causing the brain to have excess pressure against the skull in that area. We are thankful that it isn't, and no surgery will be required. With my younger nephew, my sister was very persistent with the doctors about the flatness and he gave her a list of exercises/positioning to help strengthen his neck, which has helped a lot. It is good that your doctors and you are recognizing the issue, unfortunately for my sister, she was a young mom to begin with, and her husband is in the military, so she did not have the most attentive doctors. With my older nephew, the flatness did not seem so bad at the time, but it got more noticeable as he got older, he has kind of a big head to begin with. He does have really thick hair though, so you don't really notice the flat spot until it is pointed out.

 

My son Joel has torticollis (improving with physical therapy) and plagiocephaly. He was diagnosed at his one month appointment, so he's been in physical therapy since 5 weeks old. They've been doing 3d scans of his head since then as well. He's had his helmet almost three weeks, so he got it just over 5 MONTHS old.

The helmet does NOT hurt them. In fact, he doesn't even seem to know he has it on. He is a "moderate to severe" case. We go every two weeks for them to check the fit, make adjustments, and so on.

 

What does the helmet do?? Does it just keep baby from laying on that side?? I am just soo curious about these because they are fairly new.. are they not? I know that now that we are doing 'back to sleep' plagiocephaly has become much more prevalent.

Do you think that you have to have a helmet to "fix it" or do you think that IF you kept repositioning and had them sleep on stomach/side etc.. it would be okay?

Mine don't have any of this but I was worried about it while I was pregnant cuz I keep reading about it.

So.. I always put them on their stomachs or sides to sleep from the very beginning.. I know, big NO NO, but I didn't/don't care.

Anyway, is it something that HAPPENS to the baby from the way that they lay? Or is it just how they're born? I'm stupid, sorry.

What did people do before there were helmets? How come I don't see any flat headed people my age?? Is that cuz of the 'back to sleep' revolution?

Thanks!! As you can see, I am curious.

Good luck with whatever you decide. I guess, if it was me, I would be diligent about keeping baby upright or on stomach or at least NOT on the flat area UNTIL the appt like the pp did. I bet it would help a lot.

 

QUOTE(ivfbound078 @ Jul 13 2008, 09:59 AM) [snapback]873989[/snapback]
What does the helmet do?? Does it just keep baby from laying on that side?? I am just soo curious about these because they are fairly new.. are they not? I know that now that we are doing 'back to sleep' plagiocephaly has become much more prevalent.

Do you think that you have to have a helmet to "fix it" or do you think that IF you kept repositioning and had them sleep on stomach/side etc.. it would be okay?

Mine don't have any of this but I was worried about it while I was pregnant cuz I keep reading about it.

So.. I always put them on their stomachs or sides to sleep from the very beginning.. I know, big NO NO, but I didn't/don't care.

Anyway, is it something that HAPPENS to the baby from the way that they lay? Or is it just how they're born? I'm stupid, sorry.

What did people do before there were helmets? How come I don't see any flat headed people my age?? Is that cuz of the 'back to sleep' revolution?

Thanks!! As you can see, I am curious.

Good luck with whatever you decide. I guess, if it was me, I would be diligent about keeping baby upright or on stomach or at least NOT on the flat area UNTIL the appt like the pp did. I bet it would help a lot.


Good questions!

First of all, the helmets are custom made for the baby's head. The foam inside is cut so that there are gaps in the areas where the baby's head needs to grow, and it fits flush against the parts where it is growing too fast. That forces the head to grow into the proper shape.

The baby's muscle structure at birth CAN affect it--Joel's neck muscles, for example, were so tight on one side, he could only turn his head in one direction. Sometimes repositioning can help, particularly if the baby does not have torticollis. However, in some cases, if it is not caught early enough, or if the muscles are too tight for the baby to turn his/her head both ways, repositioning is unsuccessful. In those cases, helmets are recommended.

If a helmet is not used when the baby is young enough for it to help, and the skull grows too asymmetrically, it can put pressure on the brain and cause problems. When this happens, if the baby is too old for a helmet, they correct with surgery instead.

This was generally not a problem before Back to Sleep.

 

I have been checking into this as my ds is showing signs of both plagiocephaly and torticollis. This seems to be a very informative link, and I thought I would share it with you. Hope it helps.

http://kidshealth.org/parent/general/sleep...giocephaly.html

My twins go in for their 2 month check up this week so I will be discussing it with their pediatrician.

 

This link for the clinic we go to lists a lot of the causes of plagiocephaly. There are several causes that are not due to positioning or torticollis. As I mentioned in my previous posting, Annelise had a lot of this prior to birth. Some of the risk factors are multiple gestation pregnancy, low amniotic fluid, being low in the pelvis for an extended period of time, etc. Annelise met all of those risk factors. She did not/does not have torticollis which was surprising to the doctors because many twins have torticollis. I do believe positioning has increased her plagiocephaly, however. Some babies heads will round out naturally (or with positioning changes) by the time they are 2-3 years old. Some won't. I don't believe Annelise's head shape will improve without the use of the helmet.

I'll attach a Word document about how to position babies that may be helpful for people who believe their baby or babies are getting a flat spot.

 

Here are a few pictures I took of Annelise's head today. We are going to have her head scanned for her helmet on July 21.

top view
back
profile
just being a cutie pie :wub:

 

My son is 7 months old and we are going tomorrow to get the measurements done and he will get his DOC band in two weeks. The flatness of his head has rounded out a bit since he started rolling, but there is still assymetry with his ears and a bit of bulging of his forehead. I am very anxious about the whole thing, but have read such positive things from others who have done this. I think it will be over before we know it and will be well worth it in the end. I don't know the measurments, will find out tomorrow exactly, but he has moderate plagio. You can't see any problems until you look at his head from above. I know I would be kicking myself down the road if I don't do this. Luckily, our insurance covers 90%, so cost isn't an issue so it was really a no brainer.


Good luck with everything and I will be posting about how things go with him. I am going to go to Hobby Lobby this week to find some great stickers to put on the band as well as paint that adheres to plastic.

Take care,

Sandi

 

QUOTE(Beth*J @ Jul 13 2008, 09:04 PM) [snapback]874623[/snapback]
Here are a few pictures I took of Annelise's head today. We are going to have her head scanned for her helmet on July 21.

top view
back
profile
just being a cutie pie :wub:



She is a cutie pie! Her profile looks just like my Chloe's head. At the two month our pedi didn't think it was any big deal, but I am going in again this Thursday b/c it has gotten worse. (And I reposition as often as I can.)

 

QUOTE(Beth*J @ Jul 12 2008, 05:02 PM) [snapback]873358[/snapback]
I'm going to PM a mod because I really think this info should be in the FY handbook as many people deal with it. We can share our stories and pictures.

We are currently in the process of starting treatment. Annelise has had a questionable head shape since before she was born. At our 18 week ultrasound, the doctor said that she had a strawberry shaped head which was possibly indicative of Trisomy 18. We were sent for a more detailed ultrasound with a Peri. Fortunately, the Peri said that she was a healthy baby. Her head shape was a little off, but not a chromosomal problem. At the same time, they noticed that I was having a lot of contractions and preterm labor. I was only 19 weeks, so I was immediately put on bed rest. I always say that Annelise's funny shaped noggin saved both my babies because we may not have known about the PTL until it was too late if we hadn't been sent for that extra ultrasound.

Anyway, the girls were born at 30 weeks. Annelise was Baby A and she was jammed head down in my pelvis and was very low the whole pregnancy. She also had low amniotic fluid for a bit due to anti-contraction meds I was on. When she was born her head was a little differently shaped, but didn't look "abnormal" either. As she grew, she started to develop a flat spot on the back of her head (partially due to reflux and being strapped on her back in a Danny Sling) which added to the head shape issue she was born with. The pediatrician kept saying we should just keep an eye on it. At 5 months he agreed it was time to see a specialist. We went to see the craniofacial specialist at Gillette in Minnetonka, MN just before she turned 6 months old. They said she qualifies for a helmet, but her head is a bit too small yet. We are heading back on July 21 to have her head scanned/measured for the helmet. We'll get the helmet the following week, I think. We were told she'd wear it for 23 hours a day for 3-4 months.

I will have more information in a couple of weeks and will share some pictures after she gets her helmet.

There is a yahoo group about plagiocephaly that is very active. Try this link for the Yahoo group. I'll warn you though, I bet I get 30 messages a day from them.


I use to get all the e-mails to but you can go to your settings and change it to where they only send you one e-mail that has a bunch pf posts in it or you can just change it to where you login and check it when you want. Much better then the crazy amount of e-mails. Like you said though the site is very informative.

 

QUOTE(cjk2002 @ Jul 12 2008, 04:20 PM) [snapback]873315[/snapback]
Hi,
I posted this question on the Health Issues and Special Needs Forum but got no response. I've seen a few of you talk about helmets so I'm hoping you can help me.

We just got back from the boys 6 month well visit. They both have mild flattening on the left side and she said if we wanted to do something, now is the time. They both had torticollis which is now gone. She referred us to a plastic surgeon and I'm waiting for them to call me back.

She said that 2 years ago she would not even think about sending us to a specialist but is leaving it up to us since so many parents now a days are wanting their children's heads to be pefectly round. :huh:

So here are my questions:

1. If your child has plagiocephaly, how severe is it? DS was moderate to severe, he measured at a 12.

2. At what age did they get their helmet? He was 6 1/2 months but 5 months adjusted. I was told they go by their adjusted age. I was told they see the best results with a 3-4 month wear time if they are banded between 5 and 8 months old. They will work with older children it just may take longer, more then one helmet, and may not get as good of results.

3. How long after diagnosed did it take to get their helmet? Our first visit we decided to wait three weeks to check once again and make sure he was not improving at all on his own. At our three week visit we went back and he actually measure 1ml worst being a 12 but he was moving around a lot so it is hard to know how acurate that number was. Anyway, his head was scanned and we got the Hanger cranial band the following week.

4. How long (months) did they have to wear it? He got it April 27th but we had some fitting issues causing red marks and were out of town until Mothers day weekend so he did not start really wearing it fulltime untill after that. We go back July 17th and plan on going to him wearing it only when he sleeps or takes long car rides and he should be out of it for good July 18th!
She made it sound like a vanity issue and not really a health issue. If it's so mild that after their hair grows in nobody will notice it, why go through all the pain (and cost) of a helmet? That is the decision you have to make. DS had a very noticeable flat spot. Last time he was measured he was a 5. With his hair there you can not see it and can only feel it. I am happy with the results and I honestly doubt if it was like this in the beginning I would have never banded him. If it is a issue with his jaw line or peripheral vision I am sure the specialist will let you know.

On the flip side, she said if not corrected it might cause jaw problems later in life.

We will go on the advice of the specialist but I just wanted to get some idea of what is involved in the process.

Thanks!

 

1. If your child has plagiocephaly, how severe is it?

One was moderate, the other was worse

2. At what age did they get their helmet?

CT scan at 6 months, wearing the helmet at 7 months -- acquiring helmet process took 3 weeks

3. How long after diagnosed did it take to get their helmet?

Flattening was noticed at 2 months and we did exercises to correct the torticollis and waited to see how much progress was made. Pedi made it all sound so minor but the plastic surgeon strongly urged us to get helmets since there was facial involvement.

4. How long (months) did they have to wear it?

7 months. Helmets were stopped because they would no longer leave them on, not because they were "finished". The less severe of the two has pretty much full correction but the other still is a bit lopsided. It is less noticeable now than it was at 14 months.

QUOTE
She made it sound like a vanity issue and not really a health issue. If it's so mild that after their hair grows in nobody will notice it, why go through all the pain (and cost) of a helmet?

On the flip side, she said if not corrected it might cause jaw problems later in life.


Pediatricians generally don't know much about it. You'll learn more from the specialist.

A couple of months after we were done with the process, I was at the airport and saw a couple with twin boys who were maybe 5 or 6. Those boys had the same "off" shape to their heads that we'd just finished correcting. I was never so glad that we'd spent that pile of money to get the helmets. And yes, it's mostly vanity but I don't think it's so different from getting a kid braces for their teeth.

 

Great job, Mom, for being asking these questions! My baby A was born with a flat spot due to his position in utero and it was not helped by the vacuum that sucked him out! From birth, he has regularly been visiting a doctor specializing in cranial manipulation. The treatment helped his brother, but he needed a vacuum.


1. If your child has plagiocephaly, how severe is it? Moderate to severe

2. At what age did they get their helmet? 4 1/2 months

3. How long after diagnosed did it take to get their helmet? 1 month

4. How long (months) did they have to wear it? 2 1/2 months, but we are still visiting the OMT! He's continuing to improve.

Good luck!

 

QUOTE(ladybenz @ Jul 13 2008, 09:10 AM) [snapback]873998[/snapback]
Good questions!

First of all, the helmets are custom made for the baby's head. The foam inside is cut so that there are gaps in the areas where the baby's head needs to grow, and it fits flush against the parts where it is growing too fast. That forces the head to grow into the proper shape.

The baby's muscle structure at birth CAN affect it--Joel's neck muscles, for example, were so tight on one side, he could only turn his head in one direction. Sometimes repositioning can help, particularly if the baby does not have torticollis. However, in some cases, if it is not caught early enough, or if the muscles are too tight for the baby to turn his/her head both ways, repositioning is unsuccessful. In those cases, helmets are recommended.

If a helmet is not used when the baby is young enough for it to help, and the skull grows too asymmetrically, it can put pressure on the brain and cause problems. When this happens, if the baby is too old for a helmet, they correct with surgery instead.

This was generally not a problem before Back to Sleep.


It's definitely more common since the Back to Sleep campaign; but they can be born with it--especially multiples. One of mine has a pretty wonky head. He was born with it because of the way he was positioned in utero and then getting stuck on my pelvic bone during delivery for a while. We're going to see a specialist (pediatric cranio-facial plastic surgeon, not a helmet guy) on our pediatrician's advice (they are 4 mo. old now) to see what he says regarding helmet/no helmet.

 

You've gotten some great responses already from some very knowledgeable people, so I'll just answer the questions you'd asked previously:

1. If your child has plagiocephaly, how severe is it?
I asked our pedi about my son, Jonathan, at his 4 month appointment and he suggested we watch it and engage in some aggressive repositioning techniques. At our six month appointment, he didn't see much improvement so he referred us to Cranial Technologies. At our first consultation/appointment, they deemed him to have a severe case (which surprised me). He liked to sleep flat on his back and I think that contributed to the flatness of his head.

2. At what age did they get their helmet?
Seven months.

3. How long after diagnosed did it take to get their helmet?
I think it was a week or two

4. How long (months) did they have to wear it?
3 months!

 

WTTG mommy - you're on the right track by tackling this early.

We were supposed to get Chase's helmet at Hanger Orthotics yesterday, but it didn't come in, but here's our story:

Parker and Chase were born 4 weeks early and it was apparent that since I first laid eyes on my precious baby Chase that he would need a helmet. He grew much faster than I could when I was preggo and had severe plagio at birth. Parker had the "normal" baby flat head and we weren't as concerned about him once he became mobile.

At 4 months, the ped told us to start repositioning Chase, which was a hard endeavor since he had also had mild torticollis. Well, we got an appointment with Cranial Technologies (CT) with a referral from our ped. We had the worst experience with them - it was like going to a car lot and having a sleazy salesman ask us "What can I do to get your boys in to a helmet today"... yuck!!! CT wanted to do two helmets for Chase and one for Parker!!! At $3500 each, we were grief stricken. They really laid the guilt trip on us and we felt like we needed to take a shower after the appointment. To add insult to injury, they would not even file with our insurance because Blue Cross is notorious for not paying.

A couple of months went by and our ped had to change practices (office). We finally got a referral to go to a neurosurgeon for a second opinion. Their opinion was that Chase had medium level plagio and that Parker didn't need one at all. So we scheduled an appointment with Hanger and we're expecting to get Chase's new 'hat' tomorrow. Now we're responsible for $150 out of the $1800 that Hanger charges because our insurance does indeed pay for this. So we've gone from thinking this was going to cost us $10,500 to now paying only $150. It may be the fact that we had a neurosurgeon's opinion "on the books" and that may have helped get the helmet paid for. No amount of money was unreasonal when it comes to what is best for your child but that is a HUGE difference...

Please look at all your options and make informed decisions. You will feel better in the long run and please know that there are lots of twin mommies that have to go through this decision making process.

Take care - good luck!!! PM me if you want more info

 

Thanks Ladies,
I still have not heard back from the office. I called on Friday and I think I will call again tomorrow.

QUOTE
Well, we got an appointment with Cranial Technologies (CT) with a referral from our ped. We had the worst experience with them - it was like going to a car lot and having a sleazy salesman ask us "What can I do to get your boys in to a helmet today"...


Our ped will not send us to them. She said that every child sent there gets a helmet and it's all about the money for them.

She also knows a lot about plagio & torticollis because her daughter had both. She decided not to get the helmet because she felt it was not that severe. When they had torticollis she showed us the exercises instead of sending them to PT . I'm glad she's looking out for them by sending us to a specialist that will give us his honest opinion instead of making money.

I'll keep you updated.

 

I just wanted to share that we went to Cranial T. and my sons measurements were mild/moderate so he did not qualify for a helmet. I actually had a good experience there. My sisters son did have severe measurements so he did have a helmet from there and my sister had to go back and forth there many times and also had a very good experience.


I just noticed that you are from the western suburbs and that is where I went.

 

QUOTE(Chase&Parker @ Jul 15 2008, 02:15 PM) [snapback]877819[/snapback]
WTTG mommy - you're on the right track by tackling this early.

We were supposed to get Chase's helmet at Hanger Orthotics yesterday, but it didn't come in, but here's our story:

Parker and Chase were born 4 weeks early and it was apparent that since I first laid eyes on my precious baby Chase that he would need a helmet. He grew much faster than I could when I was preggo and had severe plagio at birth. Parker had the "normal" baby flat head and we weren't as concerned about him once he became mobile.

At 4 months, the ped told us to start repositioning Chase, which was a hard endeavor since he had also had mild torticollis. Well, we got an appointment with Cranial Technologies (CT) with a referral from our ped. We had the worst experience with them - it was like going to a car lot and having a sleazy salesman ask us "What can I do to get your boys in to a helmet today"... yuck!!! CT wanted to do two helmets for Chase and one for Parker!!! At $3500 each, we were grief stricken. They really laid the guilt trip on us and we felt like we needed to take a shower after the appointment. To add insult to injury, they would not even file with our insurance because Blue Cross is notorious for not paying.

A couple of months went by and our ped had to change practices (office). We finally got a referral to go to a neurosurgeon for a second opinion. Their opinion was that Chase had medium level plagio and that Parker didn't need one at all. So we scheduled an appointment with Hanger and we're expecting to get Chase's new 'hat' tomorrow. Now we're responsible for $150 out of the $1800 that Hanger charges because our insurance does indeed pay for this. So we've gone from thinking this was going to cost us $10,500 to now paying only $150. It may be the fact that we had a neurosurgeon's opinion "on the books" and that may have helped get the helmet paid for. No amount of money was unreasonal when it comes to what is best for your child but that is a HUGE difference...

Please look at all your options and make informed decisions. You will feel better in the long run and please know that there are lots of twin mommies that have to go through this decision making process.

Take care - good luck!!! PM me if you want more info


I had heard the same thing about Cranial Tech here. That is why I asked my Ped for a referral to Hanger. Are you going to the one in Charlotte? If so, that is where we are going and we have been very happy with Jennifer and Jeff. I think what I have found from the Yahoo group is that it really depends on where you live and who your tech is. Their experience makes a big difference as well. Good luck!

 

QUOTE(Jen S @ Jul 15 2008, 10:31 PM) [snapback]878674[/snapback]
I had heard the same thing about Cranial Tech here. That is why I asked my Ped for a referral to Hanger. Are you going to the one in Charlotte? If so, that is where we are going and we have been very happy with Jennifer and Jeff. I think what I have found from the Yahoo group is that it really depends on where you live and who your tech is. Their experience makes a big difference as well. Good luck!




Yes – we’re going to the office in Charlotte and Jeff is our technician. My DH did get a bit miffed at Jeff when he said “If it my kids, I’d put one on Parker too.” I guess we had such a bad experience at CT, DH thought that was a bit much. Especially since we had already told Jeff that the Neurosurgeon didn’t see the need to put one on Parker.

We were supposed to get the band on Monday, but they called and said it hadn’t been delivered from Arizona yet and that it should be here Wed. Well, today is Wed. and I still haven’t heard from them. I’m a little disappointed, I just want to get the process started, kwim?

 

We just got back from the boys 6 month well visit. They both have mild flattening on the left side and she said if we wanted to do something, now is the time. They both had torticollis which is now gone. She referred us to a plastic surgeon and I'm waiting for them to call me back.

She said that 2 years ago she would not even think about sending us to a specialist but is leaving it up to us since so many parents now a days are wanting their children's heads to be pefectly round. :huh:

I have been researching this for over three months in an effort to see that my fraternal grandsons, born 10 weeks premature, receive the treatment which I think they need.
This problem is much more serious than flatheads versus round heads. I am married to a wonderful man who is from Poland, where I have seen many men with flat heads on the back of their heads, including my husband. This is not anything like plagiocephaly, which is truly deformational in several ways.
Just tonight I found a site which mentioned that the Pacific Northwest Indians, who reshaped their babies’ heads on purpose, stopped their efforts between 6 and 8 months of age, because they found that by that time the deformation would then be permanent. I think it’s time that the doctors who keep saying the babies’ heads will round out, when they are six months old, stop telling parents that.
There is an olderplagio support group where those in their twenties with this problem have posted their concerns, feelings, and help they are seeking.
Correcting plagiocephaly is not cosmentic; it is reconstructive.
My understanding is that you do not need a referral to go for the helmet treatment. Perhaps some do need it for the purpose of the insurance.
I hope this info is helpful for all who are looking.

 

edited - dup posting

 

How can it be permanent at 8 months? If it's very noticeable maybe, but if it isn't, our heads don't stop growing at 8 months, so it makes sense that it will even out later.

 

Okay.. My son has a helmet for 3 weeks now. It doesnt bother him, he doesnt even notice it. We get treatment in Charlotte, NC too with Justin and love him.

We see them every 2 weeks because we live in Columbia. He got his helmet earlier this month. When he was 9 months.

We have heard that not correcting it can cause an overbite as well later in life..

Our insurance does not cover it. We paid $3000. for the helmet and all treatment. Also he has moderate Plagio, but if it was worse and required a 2nd helmet, that would be another $3000.00 (And we got a military discount, normally it is $3600.00.)

Here is a link of my son in his helmet: http://dakethings.blogspot.com/2008/09/rya...his-helmet.html (Also there are more posts on my blog about him and the Plagio in the archives of August.)

Here is our doctors website, lots of good info: http://www.cranialtech.com/

A note on repostioning: Our doctor told us that if he was younger, we could start with trying things like that, but because he is older and can move into what position he wants to be in, that would not help.

Ryan was suppose to be in his helmet for 12 weeks, but after these first 3 we are seeing such progress there is no way he will be it that long.

Lady Benz has given you a lot of good info, in fact when I found out Ryan needed a helmet, I contacted her. But let me know if you have any more questions.

Hugs, Mandy

And I should add he has a little torticolis that we are doing neck strengthing exercise for.

 

My son was diagnosed today at his 6 month visit. We are scheduled to see the specialist next Monday, Cranial Tech like the previous person. The dr. said moderate to severe but we shall know more next Monday. Wish us luck and pray for the insurance to cover us. Ike did enough damage this month!!!!

 

Hey Just wanted to add that we see Justin at Cranio Tech in Charlotte for Ryan. At our first appointment, I never felt pushed to do it and he did check out Zachary too just to check and he said "nope he was fine." So he did not try to sell us when we did not need it.

I also knew going into it that our pediatrican said there was no way that he would not need a helmet.

 

Regarding the so called vanity issue: plagiocephaly has serious ramifications and can include problems with the placement
of a person's ears (with some, hearing is affected) placement of the eyes (with some, sight is affected), and where due
to torticollis, affects the alignment of the shoulders and hips, and results in sclerosis.
One authority about the human skeleton explained, when the skull is not balanced, then the spine is affected.
This condition is insidious, in that it does not appear to be that bad (as others put it) when children are babies,
but from about the age of five, it does progressively appear worse.
Regarding aggressive positioning, if the baby has torticollis, agressive repositioning does not seem to be
enough. Torticollis means that one side of the neck muscle is shorter than the other. How can one
in effect, retrain that? It is a physical problem requiring physical therapy and sometimes surgery, in
which a part of that muscle is surgical cut. It is this constant pulling, on the short neck side, that
causes the baby to lean on the same back part of the head.
As some have already explained, torticollis is sometimes developed before birth. It is not unusal
with premature babies nor twins, and would seem to me, for that reason, that a physician would
be looking for that when they know a baby was premature or a twin, or both.
Ideally a physician would identify this condition when the baby is about 2 to 3 months old.
Surprisingly, even after visiting Cranial Technologies, my son was unaware that the baby's head
can only be reshaped during the time when the head is growing, and the head has different
growth rates. Cranial Technoligies explains this on their home page. Their goal is to
capture the skull during those growth times, and then reposition the skull.
Babies heads grow very fast during the first few months, and growth continues, but at a slower pace
as they age. So it is more difficult to obtain the same results when treating at 12 months, instead of
5 months.
The way people think of this surprises me. The reason many wear braces on their teeth is not just for cosmetic reasons,
for instance. The teeth need to be correctly aligned. I have never heard aggressive repositioning suggested for
correcting dental problems. No one that I know of has ever suggested we just push on our teeth, when we can,
and that will correct the problem, or that the teeth will realign on their own.
I do have a link which shows pictures of children and young adults in Taiwan who suffered from torticollis
and plagiocephaly. It is quite alarming. This is in a pdf format, and is a medical report of a study of these
people.
Also, I mentioned in a previous writing the message board of those young adults seeking treatment for their
condition. All are either living their lives to the best in spite of it, or seeking help to do so. Some mention it
would cost $12,000, some said $20,000 to have their skulls surgically corrected, but some are considering it.
So, for those of you still undecided about the treatment, so easily available, and so easy to correct at an
early age, please consider the emotional and physical cost to your children in the future, and don't gamble
with their health. Skulls misaligned, eyes misaligned, ears misaligned, shoulders and hips misaligned (my dad
has suffered since a child, with a misaligned hip; it is very painful!) and subsequent possibility of scelrosis
are serious issues.
Please throw this back at your doctors who think this is about a round head. Are they just stupid? Suggest they
strap a few extra ounces on one side of their head, and see if they would like to live like that for even a week!
Enough.

 

Don't have a lot of time to post here, but I'm very interested to see what others have to say. We just got back from the twins 2 month appontment and our ped wants to have an PT eval done for one (but I think both) of the twins. Will check back later to post more

 

hello all...i am concerned with the flat spots on both of my babies head. my boy has it on the right side of head and my girl has it on her left side. how do you know if it is severe and I cause for concern? i keep trying to change their positions but they always seem to go back to that side.