• 3-month-old with Torticollis and Postitional Plagiocephaly
• 4-month-old's misshapen head
• Two-year-old with moderate flattened head syndrome
• Vacuum extracted head shape
• Worried about 9 1/2 month old's flat head
• related page: Torticollis (Tilted Neck)

3-month-old with Torticollis and Postitional Plagiocephaly

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

4-month-old's misshapen head

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

Two-year-old with moderate flattened head syndrome

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

Vacuum extracted head shape

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

Worried about 9 1/2 month old's flat head

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