Plagiocephaly: flat head in infants

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Plagiocephaly: flat head in infants
« on: November 13, 2007, 08:23:17 PM » by here-n-there-a-little

I have been trying to find info on plagiocephaly. Specifically if physical therapy and/or a helmet is truly warranted or if paying very close attention to positioning will help the head go back to normal shape on its own. My daughter is currently 3 months old. She originally had torticollis in her neck which the chiropractor completely cured with one adjustment. Now, it has been almost four weeks since the adjustment and I don't know that the head is getting any better... maybe worse Undecided

I have been trying very hard to change her position, putting her on her tummy, trying to avoid pressure on that part of the head, but I don't know if it is doing any good. My doctor is very conservative in this area and says that it will take care of itself. I tend to be pretty conservative when it comes to medical intervention myself, but my poor baby's head is flat! Am I being too concerned too soon or should I take action?

« Last Edit: November 14, 2007, 10:15:22 AM by here-n-there-a-little »
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Re: Plagiocephay: flat head in infants
« Reply #1 on: November 13, 2007, 09:23:13 PM » by grocerygetter

Just wanted to let you know that I will write back when I have more time...my son had torticollis and plagiocephaly. We ultimately ended up banding his noggin' and chiropractic for the tort. However, I'd love to share more of my findings, experiences, and opinions with you when I have a bit more time to write. ShabbyChic on here is a wealth of info also especially with the torticollis. There is a seperate thread on here for torticollis.

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Re: Plagiocephaly: flat head in infants
« Reply #2 on: November 13, 2007, 09:27:23 PM » by here-n-there-a-little

Quote from: grocerygetter on November 13, 2007, 09:23:13 PM

Thanks! I look forward to it.

« Last Edit: November 14, 2007, 10:24:41 AM by here-n-there-a-little »
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Re: Plagiocephay: flat head in infants
« Reply #3 on: November 14, 2007, 12:24:46 AM » by Ami H.

My 4 year old girl had plagiocephaly and torticollis when she was a baby. For the torticollis, we did physical therapy. Week and weeks and weeks and several times a week. Plus I had to work with her everyday, 5 times a day with stretches. So if your baby was cured in one chiro visit........that is awesome! If I was you, I would still do stretches with her, several times a day (at diaper changes) to make sure those muscle don't try and seize back up on her and pull her back out. Basically it was turning the neck in the position that she didn't want to turn it on her own. Also, put toys on the crib or playpen on the side that she doesn't want to turn to. Also, lay your baby on her tummy when you are watching her. For example, I would put my baby down for a nap in the pack-n-play in the living room and I would put her to sleep on her tummy with her head turned in the way that she didn't want to turn it. Laying her down in that position was about like diffusing a bomb, but I think it was one of the things that especially helped her. If I remember right, we banded her when she was 5 - 6 months old. So I think you would have some time to watch her and do these things and see if they help. To be honest, you don't want to band her unless you have to. The bands are a pain. They rub raw spots on your baby's head. They are heavy for the baby. They don't like sleeping in them, which is when they need it most. And they are hot and stinky in the summer. They are expensive and insurance companies don't like paying for them. But they do work and they are worth it if you absolutly have to. Let me know if I can help answer any questions. I am not going to be on here a lot in the week to come because I have a busy schedule. So pm me if I don't respond right back to you if you want to remind me to check.

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Re: Plagiocephaly: flat head in infants
« Reply #4 on: November 14, 2007, 11:15:50 AM » by grocerygetter

Quote from: here-n-there-a-little on November 13, 2007, 08:23:17 PM

Alright here goes my novel...I am not a doctor or anything of the sort..these are just my findings and opinions based on my experiences

Here are some websites I found regarding Torticollis/Plagiocephaly:
cranialtech.com
infant-torticollis.org
plagiosupport.org
craniology.org
plagiocephaly.info
orthoseek.com/articles/ifs-left.html

This last website demonstrates specific strectches on the website for torticollis that you can do at home. I'm sure there's some disclaimer that you should do them under the supervision or approval of a doc. You will have one set of examples for the left side and then there's another set for the right side. We personally did these in addition to what our chiropractor recommended specifically for our son.

Also, if you go to Yahoo.com they have a plagiocephaly support group. You can find them by clicking on the link for Groups on the Yahoo home page. This group has files on everything from personal experiences to tips on dealing with your insurance to ideas on decorating a band. They even have pics of other babes noggin's. Maybe that would give you something to compare to.

I would have to second Ami H's opinion to continue doing stretches even if you feel your dd is no longer suffering from torticollis. I've found that tort can be a funny monster...better for awhile then rears up again or it can sometimes even temporarily/permanently switch sides. Having an experienced, knowledgeable chiro was a huge blessing as we've dealt with these issues. We have done appointments for weeks and weeks (July-November) and are just now going once every two and a half weeks. And I'm certain that my chiro isn't just taking advantage of us and having us go "once a week for the rest of our lives"

I've met some that have that philosophy. Obviously the frequency at which you go would be based off of your childs severity of torticollis. My son was fairly severe. I would also maybe entertain thoughts of getting a second opinion (I'll touch on this in my next paragraph). Simply because this time when they're young is the easiest time to treat all of this and get correction. My pediatrician also told me that with time my son would be fine. However, we came to the conclusion after getting other opinions and researching that our son did need more severe intervention and that now (at a young age) was the time to do it. I'm hoping ShabbyChic will chime in here and give her .02 on torticollis.

Ok, onto the plagio. You can go to cranialtech.com and see if there is an office close to you. Close might be a couple hour drive. It was almost two hours for us...However, from what I gathered I found them to be the most knowledgeable, best band out there. My main point with them is this you can get a free, yes, free evaluation/second opinion on your dd's plagio. They literally won't charge you a thing until you actually band, if needed. I was concerned at first that they would push the band b/c it's their product but in the end I don't feel like they did. IMO they are worth a shot for a free evaluation by trained therapists who only treat plagio. That's all the office does, it is their specialty and you can tell. If they feel your dd does have plagio they will most likely have you do a trail run of repositioning. Then you will come back remeasure and retake photos to compare and see if the repo is working. If it's not then they will tell you all your options, including still choosing not to band despite the plagio. Keep in mind though that 5-6 months is the ideal time to band in that you will get the best results and in the shortest amount of time.

As far as our experience with the band it wasn't troublesome. I feel that getting a good fit on the band is imperative though. We never had raw spots and our ds never really seemed to care about it at all. We did band in the Fall/Winter season though and I can totally see how this would make a difference. Our insurance doesn't want to pay but through some of the websites I mentioned above I'm writing/making an appeals packet. In the end even if they don't pay it was worth the money to see the improvement in our son. It is night and day! And believe me we didn't have the money to pay for this. (I had just come out of bedresting in the hospital for 8 weeks and had those bills too). However, we prayed, and really believed this was best for our babe. The Lord has literally worked in our lives and those around us and is continually providing money to pay off the band. It has becume a great testimony!

To sum myself up...I would continue stretching. I would go to Cranial Technologies for a free evaluation. I would pray with your hubby and seek God's guidance. I would "listen" to that "Mama voice" inside you that says maybe your babe needs some extra help.

Hope that Helps

Sorry SO long but I felt it was all necessary. PM me if you have more questions!
-A

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Re: Plagiocephaly: flat head in infants
« Reply #5 on: November 14, 2007, 12:32:38 PM » by here-n-there-a-little

grocerygetter, thank you for your information and experience. I will have to look up the links.

There are two threads going on in my head:

1. How does creation and God's design play into all of this? Did people experience this hundreds of years ago? Are babies supposed to sleep on their tummies? Has something in our environment created softer heads than they used to be?

2. Are there any studies out there that say that most kids will grow out of this without intervention? Most of what I have been reading says that you have to intervene, and if you don't by age 15-18 months their heads have hardened almost too much to do any intervention outside of surgery.

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Re: Plagiocephaly: flat head in infants
« Reply #6 on: November 14, 2007, 01:23:23 PM » by grocerygetter

Quote from: here-n-there-a-little on November 14, 2007, 12:32:38 PM

Hmm...off the top of my head...I would have to say that IMO our bodies don't always function the way God designed them to - wether that be due to the fall of man or environmental changes (such as the back to sleep campaign). God did design the babies heads to be softer and mallable to make it through the birth canal though! I would imagine some sort of vitamin deficiency in our diets could and probably does effect the hardness of our kiddos noggins and I know for my ds (sorry, I didn't mention this in my previous thread) he was four weeks premature so his head was even softer. This is definitely something that I'd have to research more to have any facts on. Perhaps this is a condition that years ago wasn't pinpointed as an actual "issue". Maybe people just thought it was normal b/c they had no other options or maybe it wasn't an issue and it's something we've "created" somehow...Hmm...sorry no definite answer.

Honestly, I think some kids do out grow their plagio. I'm not sure of the facts as to why some do and some don't. I had read one study that said most kids didn't out grow plagio on their own, but I personally didn't feel like it was a large enough study. There are other resources out there (cranial sacral therapy, cranial massage) that could be tried instead of banding. My homeopathic doc even had some meds that helped improve our ds's torticollis. I think I had to intervene as a parent because my ds's case was severe. Sometime's modern medicine/technology can be beneficial. I do think there's some good info on the websites about how treatment after 15-18 months shows little to no improvement. On the flip side there are parents out there who just really want their kids to have a perfectly round head for cosmetic reasons not truly a medically necessary situation.

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Re: Plagiocephaly: flat head in infants
« Reply #7 on: November 14, 2007, 02:05:35 PM » by ShabbyChic

Well Ami H. and GrogeryGetter did a fabulous job of summing things up in my opinion. Well done ladies. I've been to all of those websites, and they're all helpful.

I think the biggest things to remember are that we live in a fallen world, and you are your child's only advocate. There are going to be viruses and sickness, so you just have to thwart off what you can and deal with the rest. Also, knowledge is power, and for me reading, reading, reading and asking TONS of questions to folks who've been there is 100% necessary in dealing with the docs.

My son's plagio and torticollis were noticed (by me) at 4 weeks old. My docs, as much as I like them, didn't want to start therapy right away. I became an overnight expert and called the next day to insist on a referral to begin therapy that next week. With plagio and torticollis you want to begin treatment ASAP to avoid needing surgery, especially if there are muscle mass tumors, which was the case with my son.

I took him to therapy 3 times a week for 6 or 7 months (I can't believe I'm already getting vague...) and it almost killed me to see her working with him and him yelling. My stomach ached. But it worked, and to see the before and after pics of his head and neck were astonishing.

He did not wear a STAR band helmet, but I had to do seriously aggressive repositioning constantly. I didn't have the luxury of using a sling, and I had to prop him with towels between his head and neck to use the bouncy seat, boppy, etc. I also had him sleep on this sleeping wedge:

http://www.onestepahead.com/catalog/product.jsp?productId=424758&cmSource=Search

It's worth 4X that price, believe me. I also remember sticking wash cloths between his head and neck at night, and holding him like a football player holds a football when I was carrying him, so that I'm constantly stretching out that muscle. He had acid reflux in conjunction with all this, and it was just hellacious for 6 or 7 months.

Once the torticollis was gone the reflux was gone too. He was late for all his milestones including rolling over, crawling, and walking. By the time he was around 15 mos. he was on cue with other kids. His head did round out very nicely without the band, but it wasn't because I just let it go. I worked hard to keep him off the flat side and keep him OUT OF THE CAR SEAT. Carrying babies to and fro in a car seat, feeding them in the car seat, and letting them sleep in the car seat bugs me... but that's another thread.

You know your baby best. If she has a misshapen head she will be off balance and late to walk regardless of what your pediatricians tell you. Yes, your sense of balance comes from the middle ear, but for a toddler to try to hold up a lopsided head with weak neck muscles is very difficult and they usually give up for a while or remain frustrated and fall a lot.

If it were me I'd continue to stretch her out, reposition her, and don't take no for an answer if you feel she needs a star band. You don't want to be in the position where she needs surgery to reshape her skull. A severely misshapen skull causes too much pressure on certain lobes of the brain, and that can cause a whole host of problems. Before I had kids I worked with the brain and some of the best brain surgeons in America, and you really want to protect your brain and spine.

You also need to look out for other problems associated with torticollis and plagio like facial asymmetry and hip dysplasia. I have a whole list of things to monitor if you want it.

I'd also solicit prayer from all your friends, family, and church family. I have a specific prayer guide that I sent for folks to pray for all my son's needs bullet by bullet point. You can PM me if you want it.

Hope this helps!

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Re: Plagiocephaly: flat head in infants
« Reply #8 on: November 14, 2007, 03:44:12 PM » by here-n-there-a-little

Thanks everyone! You have been SO helpful!

Shabbychic, that sleep positioner looks like exactly what I have been looking for!! How long can you use it though once they become mobile?
Right now I CANNOT get her to sleep in the right position. She does great until she falls asleep and then, she moves around and ends up on the flat side of her head!

What kind of info do you have on the brain being 'squished'. Is there info that suggests that it really can cause neurological issues?

As for the torticollis... I don't know if she had a mild case or not, but seriously it only took one chiro visit. Before that she looked like her head had been screwed on wrong because she preferred to only look to her right. She looked straight forward some, but would NOT turn left. I tried stretching her for two weeks but only got to the point where it would stretch that far, but she would not voluntarily look that way. The chiro did an adjustment that made her S-C-R-E-A-M! My husband said, "We are NOT doing that again!" But, you know what?! she had full range of motion in one week without me doing any more stretching. As of right now she is physically MUCH more developed when it comes to lifting head and rolling than my first child... all of this post chiro visit.

But, as I said, I am a little nervous about the flat part of her head. Trying to decide what to do next.

Oooh. Angry

I gotta go. I'll write more later.

« Last Edit: November 14, 2007, 03:57:29 PM by here-n-there-a-little »
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Re: Plagiocephaly: flat head in infants
« Reply #9 on: November 14, 2007, 03:50:33 PM » by grocerygetter

I "borrowed" ShabbyChic's prayer list and adapted it slightly to our family. I highly recommend this! I can not tell you what a blessing it has been to have people praying for us. It has literally made such a difference! God can still do things the medical community can't

I'm sure ShabbyChic will get back to you about the brain being "squished" funny. I agree with what she will share with you. I have a hubby who had hydrocephelus and spina bifida as an infant. And years later we still deal with the fall out from his neurological dysfunctions.

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Re: Plagiocephaly: flat head in infants
« Reply #10 on: November 14, 2007, 04:11:35 PM » by ShabbyChic

I'm hunting for some info on normal pressure that isn't intended for brain surgeons and selling them our products Cheesy

.

In the mean time, I've been doing research and found this site since I last wrote to you, GroceryGetter. It may be of more interest to those of you who are geared toward chiropractics instead of surgery.

It's called neurocranial restructuring (NCR).

http://www.caringmedical.com/therapies/neurocranialrestruct.asp

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Re: Plagiocephaly: flat head in infants
« Reply #11 on: November 14, 2007, 04:21:37 PM » by ShabbyChic

Another good site, although I don't agree with the concluding paragraph.

http://www.skullbaseinstitute.com/plagiocephaly.htm

Another decent article (I love this website):

http://www.neurosurgerytoday.org/what/patient_e/positional_plagiocephaly.asp

Still looking for the truth...

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Re: Plagiocephaly: flat head in infants
« Reply #12 on: November 15, 2007, 12:41:26 PM » by ShabbyChic

Another good article. Though it doesn't talk about plagio, only infectious and hereditary contributions to abnormal fontanels, it is a good FYI article for how your cranium closes and when you should expect the 6 fontanels to fuse.

http://www.aafp.org/afp/20030615/2547.html

Okay, this article is good.

It talks about concern for long term side effects with plagio and torticollis, even though I don't agree with 100% of it. This doctor feels that positional plagio related to torticollis (i.e. a child cannot fully rotate his head, therefore spends all of his time in one position which flattens one side of the head) is unfounded and will resolve itself once the torticollis has been treated.

The average age for a parent noticing his child has torticollis is 7 mos. old. If the torticollis is not found and treated while the fontanels are still pliable then the plagio cannot be left to fully heal on its own.

http://www.drstelnicki.com/2plag.htm

Furthermore, because the "back to sleep program" and resulting positional plagio that results from it is relatively new, there will just need to be more research in to the long term side effects of plagiocephaly for us to see whether or not the claims of higher instances of TMJ, astygmatism and learning disabilities with regard to pressure on the brain's lobes is founded or not.

http://pediatrics.aappublications.org/cgi/content/full/105/2/e26

Here's an article from an insurance company that says that their platform is to try aggressive repositioning until the child needs surgery to correct his skull. This way they don't have to cover the specialists visits and head bands. Now. If your child has a misshapen skull and you're told that your options are brain surgery or to leave it be and it won't affect him for the rest of his life except aesthetically, which would most people choose?

http://www.cigna.com/customer_care/healthcare_professional/coverage_positions/medical/mm_0056_coveragepositioncriteria_cranial_orthotic_devices.pdf

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Re: Plagiocephaly: flat head in infants
« Reply #13 on: November 15, 2007, 12:54:12 PM » by Ami H.

There is getting to be a lot of thistles in this patch.......LOL....Eeyore should be here any minute. Grin

About getting the insurance to pay for the Star Band. We appealed 3 times and in the end they DID pay for it. We had doctor's letters stating that this was a neonatal condition, not a cosmetic condition. In our case, we think our baby girl laid in a odd position and didn't move out of it much. The whole last two trimesters of my pregnancy I had horrible sciatic pain in my lower back and legs. Try as I might I couldn't get that baby to switch positions. I tried everything and ended up sleeping in a recliner for months.
About the sleeping wedge. We did use one similar to the one Shabby Chic recommended. It was great. We got ours at BabysRUs. I also used rolled up receiving blankets and rolled up beach towels to help position my baby.
About whether baby's should sleep on their tummys. That is a hard one. At the time, I had a great down to earth pediatrician who after I cornered him with this question finally answered me.......sort of. He said that legally he could not tell me to put my baby down to sleep on her tummy. But that the risk for SIDS was something like 1 in 1000 for those babies who sleep on their tummy. And that it was something like 1 in 8000 for those who sleep on their back. What I did, was put her down for her naps on her tummy in a visable place which in my case was the living room. I figured if she got herself face down, I would see her and reposition her. I never did have to do that. At night, we put her on her back or side in the wedge with various props. Once she could roll over well, we took all the junk out of her bed and put her down on her tummy. Honestly, I don't totally remember. By the time my kids can roll, they can usually put themselves to sleep probably sooner.
My pediatrician didn't want me to do anything about my girl's misshapen head either. He said that nobody is perfect. But we thought it was serious enough that we made him refer us to a University Hospital. They said her case was mild, but serious enough that it should be treated. From the top her head looked liked an oval on a 45 degree slant. The helmet helped a lot, but her head still is not perfectly round. One eye sets more forward than the other which makes her glasses fit weird.
About the brain being pinched because of a mishapened skull. I have no expert knowledge to support this. But, coincidentally my daughter has what is called Duane's syndrome in the eye that would have been "squished" by the skull. This is where that eye won't turn out peripherally. To see to the right, she has to turn her head. They (the internet) say that the muscle is probably not hooked up correctly or it is missing. I personally have always wondered if it wasn't pinched or crowded and therefore not allowed to develop right. She also has problems with strabismis. She has already had one surgery and will probably have another one in the future. She wears very thick glasses.
To treat or not to treat with a Band. You are going to have to go with your gut on that one. We used the band. It helped a lot. But her face is still on a bit of a slant. I know it is there because I am her mom. Dr's tend to notice it right away. But the general public does not. Hair covers a lot which is an advantage that she would not have as a boy. (not in our house anyway. Wink

Daddy makes sure the boys have short hair)
FYI, if you decide to use the band be prepared. People will stare and ask dumb, dumb questions. Just let it roll off of you. This is hard. And watching them give your baby an MRI is hard, but there are a lot of worse obstacles that parents have to watch their child go through. I remember when I went to the University hospital and how upset I was, crying out to God, and I looked up and saw another little girl about 4 years old walking down the hall with her mom. They were pulling an IV and the little girl was bald.......she was obviously going through chemo. I broke out in tears because I realized how self centered I was. Since then, I have had a daughter born with a cleft lip and palate and I am continually reminded how there are so many worse diseases out there that children could have to overcome. I still know that my little girls will grow up to become totally functional, beautiful young women. So many mommas don't have that reasurrance. I have thought about you often over the last couple of days, and I am praying for you.

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Re: Plagiocephaly: flat head in infants
« Reply #14 on: November 15, 2007, 02:32:38 PM » by ShabbyChic

Yes, my son suffered from congenital muscular torticollis and his plagio was also congenital and only worsened by the torticollis. The positional factor came on account of the torticollis and his not being able to move his head at all. He was stuck in my pelvis for at least the last 4-6 weeks of pregnancy. Big baby, little mama. I'm grateful that he got stuck head down because I was able to deliver naturally (and somewhat effortlessly).

In the end of pregnancy I noticed that he never rolled or flopped, even though he was kicking and moving like a wild donkey (a lot more active than eeyore... Cheesy

). His rear end was always under my left ribs, and his feet were always under my right ribs. No change. But his movement was so often and so forceful that I knew he was okay. It is one of the reasons we'll induce early with this next delivery.

In retrospect, I do wish I'd pressed the docs for a star band (there are SO many helmets out there) because his head is not 100% round and I know it never will be. It's a little larger on the left, and it's bigger at the top like a mushroom instead of being round like a ball. But I really am the only one who notices, and it has rounded out much better than I thought. It's just never set well with me.

My son's plagio was not as severe, but his torticollis was VERY severe. He had a muscle mass tumor (non-cancerous) on his neck/shoulder that was huge. About the size of a golf ball when he was 4 weeks old. Additionally, he had a sunken in spot behind his left ear (his left side was the short side of his neck) and I nearly threw up when I discovered it. He had mild sagging on the left side of the face, but because we began so early it has become perfectly symmetrical to the rest of the world. What can I say? It's 99% perfect. I'm his mama; I notice these things.

Other things to make sure that you stay on top of and monitor with plagio and torticollis are:

cranial-facial deformities
scoliosis (spinal curvature and deformities)
hip or feet abnormalities (including hip dysplasia which is VERY common)
palsy in his face
jaw asymetry/ TMJ and popping
headaches, eyesight problems, or pulled muscles
fibroids in the neck
misalignment or misshaping of his eyes and ears
swelling

And have we talked about craniosacral therapy? It may be of interest to some of you who go to chiropractors as well. Here's a good site for that:

www.craniosacraltherapy.org
www.upledger.com

And yes, people don't usually have a lot of tact when they see your baby, so be prepared to give an answer, solicit their prayers and move on without getting emotionally ruffled. I can remember people asking, "Why doesn't he move his head?" or "How come he's not holding his head up yet?" or "Man, he's got 5 chins."

No one understood why they couldn't hold him or why he was so attached to me, why he spit up and cried ALL the time, and why we stayed home a lot. It was the hardest thing I've ever weathered... even harder than being diagnosed with cancer.

But you're not alone. There are some AWESOME folks out there to encourage you who really understand. I honestly think that prayer is the biggest factor, prayer for discernment on the part of your man, you, and your docs. I think the difference between prayer and no prayer is the long term "What if's" are not there. What if I'd noticed sooner? What if I'd gotten a second opionon? or a third? What if we had done _____? That's my opinion, anyway.

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Re: Plagiocephaly: flat head in infants
« Reply #15 on: November 25, 2007, 09:23:43 PM » by grocerygetter

here-n-there-a-little, Just wondering how your little one was doing

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Re: Plagiocephaly: flat head in infants
« Reply #16 on: November 26, 2007, 08:49:01 PM » by here-n-there-a-little

Sorry for the delayed response... We were traveling for the holiday.
I haven't had a chance to look up all of the wonderful links you all posted, but definately plan to!

My dd is doing well. She was doing better before we did all of the traveling. So much so that I got a tremendous peace that her head was going to be all right. She didn't have any signs of the torticollis, and was sleeping on all parts of her head, both back and tummy. Her hair was even wearing off on a different part of her head. My husband even said he noticed her head 'popping out' in an area.
But then we traveled and I noticed some slight torticollis 'rearing it's head' again. It's not too bad, but bad enough that I am back to stretching her neck. We are home now, so I think we can get back to routine which includes her tummy time again and no more car seat for hours and hours.

I received my bedding items in the mail today. I was so excited. I put my mattress cover on (to prevent the SIDS mentioned on another thread) and tried out the sleep positioner... I was very disappointed in the positioner! She slid down it both times I put her down! Any suggestions?? I can tell the memory foam could do some good, but it won't if she doesn't stay on it! The wedges just don't seem to keep her up there. So, I took it out for her next nap and put her on her tummy to sleep. Oh well, at least I am not as nervous about the SIDS anymore.

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Re: Plagiocephaly: flat head in infants
« Reply #17 on: November 27, 2007, 08:05:21 AM » by Ami H.

This is where the beach towel comes in handy, or a blanket might work, but the beach towel is the right size. Roll it up the long way and form it into a U so that her butt rests on the bottom of the U and her legs rest over it. Bring it up around her body and snuggle her into it. I usually tucked the ends under the wedge to help hold it in place. You will have to experiment to see what works for you. Then you have what eventually seems like a hundred receiving blankets that you roll up and tuck here and there. It is exhausting, but hang in there.

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Re: Plagiocephaly: flat head in infants
« Reply #18 on: November 27, 2007, 08:35:17 PM » by here-n-there-a-little

Quote from: Ami H. on November 27, 2007, 08:05:21 AM

That worked! Thanks so much!

You all mentioned something about stufing wash rags and such around their necks, etc. Could you expound on that? Sounds like some good info that I have not heard about.

I didn't have time to say more the last time I wrote, so I will now. I have a friend at church who has a 7 mo dd who has plagio. Her's is much more obvious than my dd. My friend and her dh are in the process of deciding whether or not to get the Star band. They are in a situation where BCBS will not cover it because it is not considered severe enough. One of her measurements is 7mm whereas BCBS requires 10mm. When I compare my dd with hers, my dd's head isn't very bad. So, that combined with the progress we have seen and the steps we are currently taking, I am going to give it another six weeks. Apparently there is a lot of head growth between 4 & 6 months, and we are just going into that time period. So, I am just trying to read and educate myself on the situation and the options. You all have been so helpful!

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Re: Plagiocephaly: flat head in infants
« Reply #19 on: November 29, 2007, 09:22:40 AM » by Ami H.

I ended up using a lot of receiving blankets to prop here and there. For example you can roll one up and place it behind the baby's neck while they are in the carseat and help support the baby's neck/head. For example, my baby's head tilted all the way over to the right, so I would fold one third of the blanket over towards the middle, then roll it up so that one side would be thicker than the other, then I would place that like a U around the baby's neck (like one of those U shaped car pillows) then sometimes I would tuck the corners under the seat straps to help hold it in place since my baby was a wiggler. Then I usually rolled another blanket up and placed it between the side of the carseat and my baby's head to prop it up. You just have to experiment with what works for your baby. But the goal is to get the pressure off of the flat spot. Later on, I even got to where I began trying to not only getting the pressure off of the flat spot, but to put pressure on the high spots. Such as, laying her on her tummy and tilting her head while she is sleeping so that I would put pressure on the "bump" that was on her forehead. It is just amazing how moldable God made these babies heads.
Also about the insurance and the Star band. You do whatever you think is right and dont let the insurance hold you back. It has been 4 years since we did this, but when we did, we paid the $600 for the band up front (we didn't have the extra money either, we scraped to get it.) But the insurance did pay for all of the drs visits.......and there were lots. They never disputed that. You will have to go back and forth many times to get it adjusted too. We appealed to the insurance 3 times and they did finally pay. Up to that point, they said they wouldnt and that it was considered "durable medial equiptment" or cosmetic. But we insisted and kept sending it back since we had nothing to lose. Also, Christmas is coming soon........what does a 4 month old baby really need anyway........if you went to the grandparents and the aunts and uncles and said, instead of giving gifts could you just put money into the star band fund.......who could refuse?? Also, you might look into grants.......ask about it at the dr's office or the star band place. I didn't know about these things when we did the band, but 2 years ago, my fourth baby was born with a cleft lip and palate. The dr told us that if we use a device called a NAM appliance (similar to a retainer) for her mouth that we could eliminate up to half of her surgeries. How could we say no? But this device was $8000+. We knew that even if we had to take out a loan and forgo the newer car we needed that we still had to do it. We prayed and prayed that the insurance would cover this, assuming like Moses that God would provide the miracle in the same way. Finally, the insurance came back by mail and said that they would only pay 20% because the dentist that applied the device under the dr's supervision (the only man trained to do this in all the midwest) was an out of network provider. When I got the news, I cried. My eight year old son saw me and asked what was wrong.......we ended up praying about it and 15 minutes later the Dr's nurse called me. Said that she had called the dentist's office a few minutes before about something else. The dentist's office told her about our situation. So she called me and asked if they could use some grant money to pay for it that wouldn't get used otherwise since it was the last part of December at the time. So then I was crying again, happy tears. So, I guess the moral of the story is, go with what you feel that God is telling you to do for your child. If he tells you to reposition your child then to it......if you feel lead to go with the band, then do that but don't shrink back because of the money, because then you will always resent it and wont allow God to do a miracle.

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Re: Plagiocephaly: flat head in infants
« Reply #20 on: November 29, 2007, 10:25:11 AM » by ShabbyChic

I'm so sorry she slid down and you were disappointed with the positioner. I feel bad. Sad

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Re: Plagiocephaly: flat head in infants
« Reply #21 on: November 29, 2007, 10:39:13 AM » by here-n-there-a-little

Quote from: ShabbyChic on November 29, 2007, 10:25:11 AM

I'm so sorry she slid down and you were disappointed with the positioner. I feel bad. Sad

Oh DONT! It works now that I put the towel under her bottom. Works like a charm!! I am sorry that my comment made you feel bad! Embarrassed

I am just the uneducated one. It took all of you to help me figure out that a simple towel helps her stay on it!

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Re: Plagiocephaly: flat head in infants
« Reply #22 on: January 11, 2008, 06:04:08 PM » by grocerygetter

Anyone out there ever tried/experienced Cranial Sacral Therapy (CST)? We're looking at having our ds, 8 months, treated by someone trained in CST.

« Last Edit: January 12, 2008, 02:02:19 PM by grocerygetter »
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Re: Plagiocephaly: flat head in infants
« Reply #23 on: January 12, 2008, 02:02:55 PM » by grocerygetter

Bump, anyone? Cranial Sacral Therapy...

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Re: Plagiocephaly: flat head in infants
« Reply #24 on: January 23, 2008, 04:25:13 PM » by here-n-there-a-little

Here is an article that indicates there can be long term problems if condition is left untreated.
http://www.oandp.org/jpo/library/2004_04S_009.asp

It states that 45% of children with positional plagiocephaly still have a deformity at age 2-3years. It also said that there is a higher percentage (8.7% when it should be 2.7%) of these children that score below average IQ and NO CHILD was identified in the highly intelligent range (where there should be 2%). Shocked

« Last Edit: January 23, 2008, 04:27:25 PM by here-n-there-a-little »
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Re: Plagiocephaly: flat head in infants
« Reply #25 on: January 25, 2008, 10:32:52 AM » by Siege

We see a Cranial Sacral Therepist for 2 of our sons and my husband. We love her! A friend had me go with her to one of her son's appointments and I had already seen how much the app had helped her son (I do not know what his "issue" is called, but it sounds kinda like some listed on this thread. Because he was so much older when they went in to her it will take longer to "fix".) and I did not like the idea of surgery for my then 4yods. (His left side of his jaw is not in the socket.) We have seen her for 2 yrs now (not as often as would be best, but the Lord has always had the $ there when we go) and his speech is much better. He is now 6 and I can see a lot of cahnges. My 8yods started seeing her because we had the money for all 3 boys to have check-ups with her. (My 5yods is our only "normal" child Wink

) He had headaches and had not really told us. After seeing her he said, "Mom! My head does not hurt today." My 6yo is in a growth spurt right now and should be seeing her ever 2 weeks (in a perfect world) but we had to cancel today's app, so it will be a month again. My 8yo sees her once a month. We take my 5yods about once every 8 to 12 months.

My husband saw her for awhile and it greatly helped his muscle issues, but because he is so busy and $ is tight he has only the boys going right now. I had pre-term labor with all 3 boys, and after speaking with our therepist I want to see her before we have more children, as there is a possiblitly that she will be able to help with some of the pre-trem labor issues before I get pregnant again.

One thing that this therepist has told us is that if you have your baby see her within the first few hours after birth, you will avoid many issues with that child. My husband (who is not a health nut by any means) is convinced that any children we have after this will be seen by her within 1 hour of birth. For him to form this conviction is a great thing...he is the world's biggest skeptic.

Hope my rambling makes sense. CJ
(If you live in Northern MN or WI and don't mind diriving to Duluth, PM me and I will give you the name of this lady's business.)

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Re: Plagiocephaly: flat head in infants
« Reply #26 on: January 29, 2008, 04:01:15 PM » by grocerygetter

This is in response to the above posts about CST

I just wanted to put my .02 in for people who might need this in the future.
Since I've last posted we decided to take my son to see a CST (after banding for his plagiocephaly and chiropractic for his torticollis, see above posts of mine).
In hindsight I would still choose to band him. However, I would have had him seen by the CST immediately after birth and after the banding (if it had still been necessary). I feel like his plagio was so severe that the banding was necessary but was GREATLY complimented with the CST. There were some minor issues left over after his banding such as misaligned ears and his chiropractor couldn't get the final rotation in his neck. They got him *so* close, but not quite. They were the ones who finally sent me to CST.
After one session (it basically took all day, really two appts.) I've seen changes in him already! In the couple days following his appointment he began to "scoot" (not technically crawling though), he cut two teeth, began waving, his ears have moved more into alignment (not completely just closer than they were), he's hungrier, and sleeps better.
I'm not claiming everyone would have these results but it proved to be well worth the money for us. It impressed my hubby too, which isn't easy. Our CST lady explained to me also how I would most likely be able to avoid bedrest and preterm labor in the future. CST is something I would recommend looking into.

« Last Edit: January 29, 2008, 07:28:57 PM by grocerygetter »
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Re: Plagiocephaly: flat head in infants
« Reply #27 on: January 29, 2008, 07:12:45 PM » by here-n-there-a-little

So what do they do? To be quite honest, it sounds quite strange. My cousin is taking her little girl for plagio just recently too, but I haven't gotten out of her what they actually do while there.

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Re: Plagiocephaly: flat head in infants
« Reply #28 on: January 29, 2008, 07:47:06 PM » by grocerygetter

Quote from: here-n-there-a-little on January 29, 2008, 07:12:45 PM

So what do they do? To be quite honest, it sounds quite strange. My cousin is taking her little girl for plagio just recently too, but I haven't gotten out of her what they actually do while there.

LoL

I was nervous about this before we went too! I've built a close relationship w/ our chiro (who referred us to the CST) and was chatting w/ her the night before picking her brain trying to figure out exactly what they were going to do. I was nervous it was going to be "new age" and that I would have traveled all that distance and spent all that money to have to say "Thanks but no Thanks, I don't want you to treat my son". You can check out upledger.com but I don't think it does a good job explaining an actual appointment.

Here is my explanation in a way that I find helps the general public understand what CST is. It's almost like finding pressure points (that's not the term a therapist would use) in your muscles that the therapist then applies pressure to with their fingers. Through a systematic process of working on your muscles *all* over your body then the muscles will "release", the tension lets go. It sounds so simple (and even looks simple) yet has dramatic results. I hope no professional CST person ever reads that

but that's how I find it makes sense to most people. In adults sometimes they will use electrodes (they look like an EKG machine, but instead they massage your muscles) I in no way felt our appointment was new age. I'm assuming as with almost any alternative form of health/medicine this could depend on your health professional and where they're coming from personally.

I wasn't aware of it but after observing my sons session I realized I had had this done to me as a teen after a traumatic car accident that left me in pain and in bed for months. I had an incredible recover after just a few treatments. I was able to go back to school slowly but surely and have a much better recovery than anticipated. In me personally it took care of severe whiplash, migraines (caused by the damage done to my neck muscles), a bout with Raynaud's Syndrome (also a result of the car accident), and later in life it helped with sciatica pain during pregnancy. In hindsight (after my sons appointment and realizing I'd been treated this way by my previous chiropractor) I believe it is what kept me from preterm labor in my first pregnancy, I just didn't know it.

That's just my take on it in a very small nutshell

HTH!

« Last Edit: January 29, 2008, 07:48:55 PM by grocerygetter »
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Re: Plagiocephaly: flat head in infants
« Reply #29 on: February 01, 2008, 11:32:42 PM » by here-n-there-a-little

Well... we went to the star band people today. We went in just to get info, including dd measurements since we still had no idea how severe she was. She was 11mm! Shocked

I really was a little surprised. I am amazed at how blinded we can be as parents sometimes. On the one hand, I knew there was an issue (even though our doctor did not), but I had no idea how much of an issue. Because of her age, and the progress we reported there has been on her head (her lower ridge pushed out over the last several weeks), he felt we might want to wait three weeks and get her remeasured. My husband and I both went into this appointment feeling like we would end up waiting until after she was six months no matter what they said. And, that is what they suggested, really. But after we left and thought about it, we both felt like it wouldn't improve enough in the next two weeks to the point we 'wouldn't' band her. So why wait? The sooner we take action, the quicker the intervention should go.

And then we found a forum of adults with plagio... and that was heartbreaking! That pretty much sealed the decision. We can't let dd head get to the point that these adults are talking about. The medical profession is saying, "we don't know what the long term effects of leaving plagiocephaly untreated will have because it is such a 'new' phenomina". Well, its not new in the sense that there hasn't been anyone with the condition. Its only new in the incidence! The adults on the forum will tell you that everything we are afraid of happening to our children is happening to them! Here is that link if you are interested:

http://forums.craniology.org/?showtopic=341

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