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Help! My 9 month old has positional plagiocephaly (misshapen head). It's not severe but definitely noticeable. We've asked our doctor who says that it will PROBABLY correct itself over time. We have friends who wished they had done something because their babies' heads did not correct themselves fully. They did get better over time, but they live with small to medium sized flat spots.
So, I'm looking into what there is to do. There are helmets, band & craniosacral therapy. And of course, repositioning his head during sleep, which is what we are doing. It's hard with a 9 month old. He moves a lot during the night so we are usually checking a few times and repositioning him every night. There has been some improvement, but some of the issues of the shape are on the top of his head and positioning him doesn't help that area.
I'm hoping to get feedback from the fine folks of BPN on your experiences with any of the above treatments and/or hear about any others that I don't know about yet. There is so much information to sort through. Not to mention me feeling like something has to be done and we're running out of time. And, not wanting to make the wrong choice.
BTW - we do have an appt. to talk with a doctor about the helmet in a week and I'd like to meet with a CST practitioner, so any pointers on what to ask would be great too! Thanks. Cris
Long story: I was in your EXACT shoes when my child was 9 months old. But I had noticed my son's head was VERY FLAT in the back at 4 months and raised concerns then with the pediatrician. All the pediatricians in the practice assured us at one time or another that ''Oh, he'll be sitting up more soon, it'll correct itself.'' Well, no one listened to me. The main problem was that he slept flat on his back all night and was a WONDERFUL sleeper - 12 plus hours straight every night. Great for my sleep, but bad for his head. So by 9 months, the back of his head looked like a sheer cliff. FINALLY, his main pediatrician assented to giving us a referral to the main cranio-facial doctor at Children's in Oakland. He was pessimistic because to correct with a helmet, it's best to start at FOUR MONTHS (when I started begging my pediatrician for assistance but was rebuffed). We went to get a 2nd opinion then in San Francisco. The doctor there said he'd put Declan in a helmet - because why not?
You see, we had also tried in vain to reposition our boy -- safety pinned towels to the side of his pajamas so he'd tilt one way and then another on the next night ... but that didn't work. Neither did a wedge pillow. He'd eventually nestle right back into where his flat head met the flat mattress because it was most comfortable -- flat on flat, after all.
We went back to Oakland Children's and all of sudden the doctor thought a helmet would be ok. So we did it for 6 months. It WORKED. His head isn't flat in the back anymore. Now, it would have been a much more drastic improvement if he'd had the helmet earlier, say even 3 months earlier. His head shape is unlike anyone in our family's - very round because the skull pushed out that way while flattening in the back.
Anyway, good luck. Get the helmet. The 6 months go by FAST and the child is remarkably cool with it. Take all your pictures during the 1 hr break each day for bath and helmet cleaning. You won't remember it at all hardly! --Charlie Brown's Mom
After overcoming the initial guilt about allowing our child to sleep in a poor position and feeling neglectful about it, we embraced the treatment and are very pleased with the outcome. The head is near normal and the months in the helmet are long forgotten. The technicians at CTRS were great. We had the added benefit of a supportive medical professionals and very easy-going child. We found some additional support and information from the Plagiocephaly Group on Yahoo Groups.
All the best in your search and decisions. Plagioparent
My 10-week old baby boy has an alarming flat area on the back of his head from sleeping on his back. Our pediatrician told us that this will resolve itself but it's so severe that we question if this truly will be the case. As it seems that we would not be the only parents encountering this issue from having babies sleep on their backs, we are hoping for your advice/suggestions on how to stop his head from getting flatter short of having him sleep on his tummy (which is a big no-no) or on his side sandwiched by two rolled up towels (he refused this technique). Many thanks! anon
Will sleeping on his back cause a flat spot on my baby's head? http://www.babycenter.com/404_will-sleeping-on-his-back-cause-a-flat-spot-on-my-babys-head_1187992.bc
And this more comprehensive BabyCenter article on plagiocephaly (flat head syndrome): http://www.babycenter.com/0_plagiocephaly-flat-head-syndrome_1187981.bc?showAll=true
It's definitely better to address this sooner than later. Dana
Well, they kept saying that until he was 9 months old. The problem was, he was quite big for his age, and an incredible sleeper. And a sleeper in just 1 position - on his back. At 9 months he still could not turn over from back to front. Finally, at 9 months, my pediatrician's group (a different doc than his main) relented and referred us to a consult. Why they had to wait so long was beyond me - it was no skin off my ped group's back to refer us. Meanwhile, I had been genuinely VERY concerned as of 4 months.
We went to two craniofacial doctors. One in Oakland, one in SF. Both were FLABBERGASTED that we had not been referred earlier - like at 4 months. They both said that pediatricians are NOT dealing with this properly and they should be referring patients at 4 months - because that's when you will have much more success reshaping a plagiocephalic (misshapen) head with a helmet.
So yes, we had to have a helmet (as it was not a premature closing of the skull's sutures, aka craniofacial synostosis, as determined by a CAT scan).
We were at a serious disadvantage not getting the helmet earlier. His temples were sort of bulging out, his face was round, and the back of his head looked like a sheer cliff. The growth rate of the head is minimal between 9 months and 18 months, but that's what we had to do. He looks good now at 16 months - but then again, I'm his mom. Just today I got a comment about how round his head was and how I must be the au pair because he doesn't look like me (WHATEVER!). I have to let it go that we didn't get the helmet earlier, but it ANGERS me because I was on top of the situation from the get-go, and no one would listen to me. --Charlie Brown's Mom.
However, you really have to get some side-sleeping in somehow. Can you roll him over to his side after he falls asleep? I alternated depending on which side I had nursed them on to make sure to switch it up. If that doesn't work, try swaddling him super tight, and sleeping him at an incline strapped into a bouncy chair on his side, with his bum slung through one of the legholes. Again, you need to stay nearby to make sure he is secure. You can also do this in a baby swing.
An Ergo, sling or Bjorn will also get him off his back for naps during the day, but obviously you can't do that for every nap, and you probably don't want to set that habit by making it an expectation rather than an occasional variation. Good luck! Creative sleep strategist
My niece's doctor had her wear a special helmet that helped shape her head correctly. They said she might have to wear it for 9 months to a year (I think). She is getting it off after only 3 months. It started working the first month, and her head looks totally normal. She was six months when she got it.
Just two different stories that I thought might help you decide what to do. anon
Also, carrying our boy was an impossibility. I'm strong but he weighed 30 pounds at 6 months. I couldn't carry him when he slept. You may not be able to either. Also, he NEVER liked being carried that much anyway. He preferred to be in a swing, or in his crib.
Finally, I'll add that the helmet is not cruel. It does not hurt. My guy cried the first time the orthotics guy put it on, but that was more because he didn't really like the orthotics guy. That was the only time. He never cared about the helmet. And he was nine months old when he first wore it. The younger kids that get it at the times they should - around 4 or 5 months - are MUCH less aware and they adapt SUPER easily. Anyway, a helmet also came in handy when he began walking because he would have really cracked his head a few times there...!
I also got the helmet in a color of his dad's school and put some stickers on it so it looked like a football helmet. Combined with a baby's football jersey,...he actually looked SUPER cute. --Charlie Brown's Mom - and a fan of the helmet.
When my second was also born with torticollis, we acted more quickly. I got him in PT nearly from day one and as the torticollis resolved early, he avoided the flat head and we avoided the helmet.
DO NOT BE AFRAID OF THE HELMET. My experience: 1) the kids look cute in them. 2) many other parents are aware of the helmet and we got a lot of support from people in the street. 3) the kids head reshapes very quickly the younger they are but as they get older, the head grows less quickly so you have to have the helmet on for longer. Do it early if you are going to do it. and 4) most important, babies don't notice the helmet, aren't bothered by it in the least, and it's over before you know it.
Finally, though, the reason we took the aggressive route and went with helmet versus ''it might resolve itself'' was simple. Once he's grown, you can't fix this problem. The time is now. So for me there wasn't really a ''choice.'' I'd rather regret having done something & it didn't work out than having not doing something and later regretting it. the time is now.
We loved the helmet, our son not from the first second minded it, and we have some adorable pictures of his blue eyes peeking out from under his beautiful blue helmet. happy helmet mom
Hi, Wondering if any parents can share advice on infants who have been diagnosed with both Torticollis and Postitional Plagiocephaly? My son, who is 3 months old, seems like he may have both (his Pediatrician has just referred me a Physical Therapist and a Cranio-Facial Surgeon). He was born with a squished face and nose, and we were told that he must have been compressed in the womb (he dropped quite early), but they suspected all would normalize over time. His nose popped back into place within the first few weeks, but his cheeks and eyes still seem a little asymmetrical. He also tends to tilt his head to the left and look towards the right (same direction that he was squished while in the womb), and has developed a flat spot on the back of his head - off to one side. It's not dramatic, but noticable if you study his face - and especially when you look at him in a mirror. If any other parents have info on how treatment works (or doesn't) for PT and or DocBand (helmut) therapy, I'd be most appreciative of the information. Thank You gs
We moved relocated back to the east coast 3 months ago and luckily found a pediatrician who 100% agreed that my son had a severe case of ''flathead'' and needed to start treatment with a DOC band ASAP. He is now wearing his DOC band and after only 3 weeks of treatment his head is noticeably in a much better shape, basically a ''normal'' head shape.
I urge you as a parent to advocate for your child and see a pediatric neurologist very soon. From all the research I have done, the best time to start treatment for plagiocephaly is between 3-5 months for the best results. In addition, the younger a baby starts treatment, the shorter amount of time they need to wear a DOC band.
You can visit the Cranial Technologies website at www.cranialtech.com. They do not have a clinic in the Bay Area, but they do have one in San Diego.
Please feel free to contact me with any questions. Good luck! Dana
His cranio-facial specialist was Dr. Elio Gizzi, a very knowledgeable and kind person, who is director at the Craniofacial Center in Children's Hospital Oakland. http://www.chocraniofacial.org/webpages/abouttheclinic.htm We were advised that a helmet would not be necessary, because the asymmetries would correct by themselves. However, we did not want to wait and see if they would correct or not and we opted for the helmet.
The orthotist who made his helmet was Peter Villalpando, from Walnut Creek. He is very sweet with the babies, and he explained everything to us. The helmet must be wore a couple of hours during the first day, increasing until the 5th day when the baby will be wearing the helmet almost 24 hours.
The big problem was that our baby was in helmet therapy during summer, and he sweated a lot. At the beginning he was uncomfortable, but then he got used to it. Other inconvenience was to teach caregivers at child care to put/take off the helmet when necessary, but we managed to do that. You will have to visit the orthotist every two or four weeks, depending on the stage of treatment your baby is, and you need to be aware that the treatment should begin before the 6th month in order to have better results. Feel free to email me if you have further questions Cristina
Has anyone had any experience with an infant born with a mishapen head? This is NOT positional plagiocephaly but seems more like a type of craniosynostosis (premature closure of the sagital suture in her skull) called ''scaphelocephaly.'' She is a happy, healthy, developmentally appropriate 4 mos old girl. We see a physical therapist. We have now been advised by her pediatrician to get a CT scan and consult with a neurosurgeon at Kaiser. Anyone with experience with this? anon
The reason your pediatrician has recommended a CT scan is with Craniosynostosis, the brain continues to grow in the path of least resistance. They need to make sure the brain has somewhere to grow. Unfortunately, even if the brain has open sutures where it can grow, it's hard to predict what appearance the child will have as the brain grows. In the case of our daughter, she went from a slightly misshapen head to a severly misshapen head.
When she was five months old, she had bifrontal craniotomy surgery at Children's Hospital of Oakland. Dr. Peter Sun was her neurosurgeon and Dr. Bryant Toth was her plastic surgeon. (They are both fantastic as is the CHO craniofacial program and staff, and I can tell you lots of detail about that if you like.)
Our daughter continued to have problems. (This is due to the nature of her syndrome, which is an active process. Lots of kids that have simple Craniosynostosis have one corrective surgery and that suffices.) She had multiple CT scans and finally had a second surgery at 13 months.
The surgeries were quite dreadful and it was a terrible time. I tried many alternatives including acupuncture and cranio-sacral therapy, but it became obvious that surgery was our only option. I hope that you won't have to go through that. You may email me for more information if you are interested. Laurel
I have a 2-year-old with moderate flattened head syndrome (positional plagiocephaly), which was not treated during infancy following our pediatrician's advice. Everyone told me her head would round out on its own, but it is still rather noticeable at 2 years of age, especially since her hair is naturally thin. Her head is oblique, and her ears are assymetrical. Does anyone have an older child (2+ years old) whose flattened head did round out on its own eventually without treatment, or can share experiences similar to ours? I know it's a totally cosmetic problem in our case, but I'm still concerned as cosmetic problems can have social consequences in one's life.
Another person I highly recommend that I've gone to is Michelle Reddel at 510-649-9169, 2560 Ninth Street #313 in Berkeley. She does a combination of chiropractic cranial sacral work. I know many people are sceptical of alternative treatments like this, but what do you have to loose. It's not invasive or painful, there's no medication nor needles. I have seen it work wonders with children that have colic as well as other issues too. anon
My baby was delivered vaginally but with the aid of vacuum extraction. She's now 9 weeks old, and her head is still quite misshapen (elongated and flattened on one side, where I believe the vacuum was applied). Does anyone else have experience with this, and have any idea when the head will become more normal-shaped (and when I should start worrying)? Thanks for any advice. Kim
Our pediatrician recommended lots of tummy time and to see if we could get her to sleep with the rounder side down (reducing the pressure on the flatter side).
At 3 months when she was better but still nowhere near round, we asked our pediatrician about options and she sent us to Dr. Peter Sun at Children's to make sure that it was positional plagiocephaly (even though it was because of the vaccuum, not from sleeping on her back...) and not that the bones of her skull were fusing incorrectly (this condition is very rare).
He could tell on sight that it was not the incorrect fusing and said that if at 6 months it wasn't significantly better, we could try a helmet. She'd have to wear it 20 out of 24 hours every day for approx. 3 months.
Two reasons the helmet is not an automatic next step: 1. it's often not covered by insurance and 2. most plagiocephaly is due to kids sleeping on their backs, which has only been recommended for the past 10 years or so to reduce SIDs. So there hasn't been much research to show that kids with helmets end up significantly better than kids who don't do anything. The prevailing opinion seems to be that by the time they are 10, you usually can't tell the difference.
We just had her 6 month checkup and our pediatrician agreed that while her head is still sort of square-ish and flatter on one side, it is better and she's fine. We're hoping her hair grows in soon.
And I asked the guy who cuts my hair about head shapes and he laughed and said that most adults actually have oddly-shaped heads and that dealing with flat sides and odd bulges is actually a big part of giving a flattering haircut. Jenna
My 8 month old daughter has had an asymmetrical face since birth. At first the doctor thought it would even out, but it hasn't (the left side is slightly smaller - her eye, cheek and mouth). I'm not that worried about the visual aspect, but her tongue also seems to work less well on the left and I am concerned about a speech impediment. Her pediatrician doesn't think it's worth pursuing yet, but I'd like to see a pediatric neurologist to ensure that there are no problems that I could remedy early on. Does anyone have any experience with a similar problem and/or a specialist to recommend?
Many of us have some asmmetry without any underlying cause. Some asymmetry, however, can be attributed to an underlying syndrome. Our oldest son, 13 years old, has a very mild form of ''Goldenhaar Syndrome'' with hemifacial microsomia. Basically, the left side of his face and jaw are ever-so slightly smaller than the right side. Even now, most people don't notice. This syndrome can also affect the ear canal (slightly smaller, very slightly impaired hearing on the left side) and can involve the vertebrae. Our son had some surgery on the left corner of his mouth when he was 18 months old to correct a slight droop. His orthodontic needs are slightly more specialized. But basically, he's growing up without any challenges. He is still monitored periodically by UCSF.
It's probably worth a call to UCSF to just check in. Good Luck! anon
My 9 1/2 month old baby boy has a flat head from sleeping on his back and side. I understand that flathead is a result of preventive measures we must take against SIDs. I have pointed out the problem to my son's pediatrician. He agreed that the boy is getting flat head, but did not appear concerned and said there isn't much we can do about it. I'm not sure if that means there is nothing we can do about it or if that means our insurance won't pay for whatever needs to be done to correct the problem. Any ideas, suggestions, solutions or feedback on flathead? I've read articles about how to prevent it, but it's a little late now. Thanks, Jo Ann
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