This is really a subject dear to my heart, because I am waiting right now to hear from my son about my two little grandsons, and what Cranial Technologies told hmy son after his twins went there two weeks ago.
I have been researching this for over four months, and the hundreds of
posts I have read by parents who have babies and children with these problems, which were not treated in a timely manner, are just heartbreaking.
There is a support group for parents with plagiocephaly babies and for adults with plagiocephaly and/or torticollis.
The young adults are asking for any information about how they can get help with this problem, and many say they wish so much that someone had
done something about it for them when they were babies.
I read the ehealth forum wants to be the one stop for helpful info, but unless they have the sites I have found on this topic, they will not be.
There is absolutely misinformation about this issue.
Because the pediatricians are working at lower the cases of SIDS (Sudden Infant Death Syndrome) they began a campaign in 1992 to get babies to sleep on their backs. This was not the norm for many, many years, and some parents have written their babiy would have choked on formula or milk which they were spitting up while lying on their back. While I can't recommend that mothers put babies on their tummies to sleep, as the SIDS cases have significantly dropped, I will say it is essential that these babies have time on their tummies. If I had a baby in my care, and could be with the baby during the day, I would carefully watch over the baby during daytime naps, with the baby on his tummy - but that's just me.
Also, part of what is contributing to the high incidence of positional plagiocephaly is that many babies are not only sleeping on their backs, but spending a lot of time in a reclining position in swings, baby recliners, and carseats, with the back or side back of the head getting pressure in the same place.
Another contributor is a neck muscle condition called torticollis, sometimes called wry neck. One side of the neck has a muscle which is tighter and shorter than the other. The baby's head will tilt because of this, and again, it means when lying down, they are on the same spot on the back side of their head.
It is not unusual for premature babies and/or twins to have one or both of these conditions. Some are born with them, some are developed after birth.
While doctors have assured that this does not affect the baby's brain growth, many parents are reporting delayed motor skills. It is probably not anything to worry about, because eventually they catch up.
The only other thing about this, is that the doctors often say the baby's head will round out when they start sitting up, but many of these babies don't start sitting up until they are 8 or 9 months old. That is on the late end of the scale. Some babies start sitting up at four months.
My personal thought: heads are heavy, and plagiocephaly conditions would cause the weight of the head to be unbalanced. I would think this would make it more difficult for a baby to balance enough so they could sit without falling over. If they do manage to balance the rest of their body, in spite of their head weight not being balanced, this would mean they are compensating, and having to use one side of their muscles differently than the other side. This presents more problems
In fact, there are documented cases (some doctors who examined patients in Taiwan) of people who had torticollis and how the condition affected them when it was untreated. As they grow older their ears are more unaligned, one eye is not in the correct placement, the jaw is misaligned, the shoulders, spine and hips are affected. The facial anomilies are greater as the child ages.
In the many posts I have read, parents write that they were told their babies' heads would round out, but they did not. Many are very sorry they did not heed their own concerns and proceed to have the helmet or band treatments, along with the physical therapy, if it was needed for those with torticollis. Not once have I read a post or blog or web page of a parent who wrote they had these treatments done for their babies and were sorry that they had it done.
The young adults with these conditions (many in their twenties) write they are sorry they did not receive treatment as babies. They are asking if anyone has any info about surgery for correcting their head shapes and other facial anomilies related to this.
Many parents report problems getting the insurance company to pay for treatment. Insurance companies often regard it as cosmetic, but it is not cosmetic; it is reconstructive.
The optimal time for the helmet or band treatment is between 3 and 6 months, though many have had good success with later treatment.
I favor getting the treatment, because there are so many posts I have read of parents with babies whose heads did not round out. If one waits much longer, the results are not as good as they could be. The problem I see is what if this is a baby whose head does not round out? It is a gamble not to provide the treatment, and it is gambling not with my head and body, but with someone else's head and body. This means a life with continuing development problems of an unbalanced head and body, with the accompanying physical difficulties and pain. (TMJ is linked to these conditions.)
If you do not find all the info you are looking for here, and I have yet to see any one site that has all the info together, you can search these topics out on the internet.
Frankly, I consider it misinformation for anyone, particularly doctors, to post or write that babies' heads will round out on their own (except for the first six weeks after birth), when the baby has plagiocephaly, or any of the other similar flat head conditions. Usually I see such comments written as usually their heads will round out on their own by age such and such (sometimes two years old; that's a long time to wait and see....) Usually is not the word I want to hear when I am concerned about my baby, or my grandbabies.
Their are several blogs and posts by parents with their stories and pictures, and I think all the ones I read shared that their baby did very well with the helmet or band treatment, i.e., it was not a traumatic experience for the baby.
I hope this is helpful for those of you searching.