Posting this again, my plagiocephaly sticky isn't getting many hits. Not going to make this one a sticky, though, just a gentle reminder to be updated on information and aware of possible problems :)
Does your young child have a pretty bad flat spot on one side of his or her head, with a bulge on the other side? Do facial features kind of slant and aren't really symmetrical with one another, or is one eye or cheek bigger on one side then the other? Does one ear seem higher or further forward then the other ear? Your child may have plagiocephaly.
Does your young child have a very wide head, with the back of the head being kind of uniformally flat? Your child may have brachycephaly.
Does your young child have a very thin face, with the head being very very long on the sides, or does it kind of slope upwards to a cone-ish shape? Your child may have scaphocephaly.
Does your young child always look to one side, or always look like their head is tilted to one side? Your child may have torticollis, shortened or weakened neck muscles of one side which can cause any of the above situations. This condition needs physical therapy.
If you notice any of the above in your young child, please get a referral from your general pediatricion (who is not qualified to make a diagnosis) to a practicing neurosurgeon, neurologist or pediatrician who specialises in orthotics. The doctors you can be referred to who are qualified to make this diagnosis can be found at www.plagiocephaly.org , along the left hand side, under 'find a physician'. This doctor can make recommendations on the severity of your childs case, and teach you how to prevent it and fix it on your own, or may refer your child to a corrective device. The above situations have been linked as factors in some various medical impacts such as slow or delayed mental development, TMJ, poor eyesight and migraines, as well as facial deformity if severity worsens.
Prevention and proper positioning are KEY. If you are interested more, please visit my Positional Plagiocephaly thread in Bringing Up Baby, or visit:
www.cranialtech.com for general information, how to prevent, how to diagnose. Cranial Tech is the manufacturer of the corrective devices used to treat severe cases, but are very much involved in spreading awareness and helping prevention.
http://www.cappskids.org/CAPPSPlagioPreventionHandout.PDF to learn what you can do to prevent these from occurring.
www.plagiocephaly.org for general information and a search program to find neurologists/neurosurgeons/qualified orthotic pediatricians in your area.
If you are expecting a new child in your life, please keep the prevention information handy, as prevention is key. If you are not, please pass along the information to anyone you know who may be expecting or have a child under 1-2 years of age.
Thanks!
Cristi
oh thank you naivette
OMG!!! Kayla has scaphocephaly! What do I do for it? I turn her head all the time.
Angel hon, get a referral from your doctor to one of the following doctors:
1. Ahmad Zekerl M.D. - specializes in neurosurgery in Toledo, his number is 419-479-5590.
2. Dr. David Billmire - specializes in orthotic plastic surgery, located at 3333 Burnett Ave., Cincinnati, ph # 513-636-7181
3. James A. Lehman, MD - located 300 Locust St. Suite 590, in Akron, Tel # 330-253-9161
4. Lawrence M Spetka, MD - Neurosurgeon, Toledo Clinic 4235 Secor Rd., Ph # 419-479-5590
The closest to you is #2, David Billmire. Call his office and tell the receptionist you're worried about Kayla having scaphocephaly and you want to make sure that David Billmire can make a diagnosis before you get a referral. If his office says yes, then get your doctor to make a referral for an appointment there. No need to panic, they can determine whether or not Kayla's Scapho is mild -> severe, or whether it's scaphocephaly at all.
I don't want to alarm you, but in premature babies, it can be scaphocephaly, which could be treated with repositioning or a corrective device, but it could also be craniosyntosis, which would DEFINITELY require surgical correction because craniosyntosis is often mistaken for scaphocephaly, and if it isn't surgically corrected it will restrict and distort the growth of the skull. Only a qualified doctor (one of the above) can make that diagnosis and tell the difference between the two.
Don't be too worried right now, but I'm very surprised no one has ever said anything about the risk of cranio/scapho in premature babies to you before. See why I'm doing my grassroots awareness campaigns? Normal doctors and pediatricians have no fucking clue. It's definitely important though, so call Dr Billmire and make an appointment.
Oh and Angel (and anyone else who's concerned about their own child's head) If you want somewhere to just vent or ask questions or concerns about possible plagiocephaly, brachycephaly or scaphocephaly, I belong to the following site, it's a yahoo group that you could join for questions or support. There's like, 3000 members, and all of them have children who are having problems with these conditions. It's a super great support site, and they really help calm concerns and worries, as well as help you along the way. I'm sure there's even some women there from Ohio, as well as women who have dealt with premature babies and scaphocephaly or craniosyntosis.
http://health.groups.yahoo.com/group/plagiocephaly/
When do symptoms begin to show in your child? Is it right from birth or what? I read this and then I ran and I checked out Niko's head and I don't see any of those things but could they possibly show up later? He is 4 months old. I don't want to be paranoid but I want to know if it is something that I should keep in the back of my mind ya know?
Hon that head shape (from top) is VERY common... Its the same head shape as Khylie and she doesn't have scaphocephaly. She had a skull fracture and was checked for everything so we'd know... her head was that shape before we fell... sooo don't be overly concerned I'd just tell my dr my concerns...
That's actually the attitude that needs stopped and is making this such a widespread problem now. That head shape actually is not 'normal', a variation of it is yes: it's normal to have a slightly longer head, but that picture right there is to show an EXTREME case of scapho, so if the head is really similar to that shape, it does warrant concern. Not panic though, because it's not going to pose a threat at all right now even if it was, kwim? But there's cases much milder then that where it needs treatment, so I wouldn't suggest just writing it off. Don't get overly worried, but if you see the above cases then definitely get a referral to a doctor who can make the diagnosis. Most people and doctors alike aren't educated in it and the developmental/medical affects these off headshapes can carry. They'll try to tell you it's just a cosmetic procedure (whereas the AAP issued a statement saying the links to medical problems are too strong to call the procedure or disorders cosmetic), that it's normal for people to have off shaped heads (it's more and more common but mostly because the awareness to stop it isn't out there, doesn't make each and every case less important, it's still important to get it diagnosed) or that it will round out on it's own. It won't round out on it's own, unless you're taught tricks of *extreme* aggressive repositioning.
It isn't something that will just pop out of nowhere for whoever asked (I forgot the UN who asked.. doh!) If your son/daughter is 4 months old and has a round head, then chances are you're doing something right with his/her positioning and keep it up. It's only caused by either inuterine positioning (having the fetus skull resting against your tailbone for example), prematurity (the ride through the birth canal shapes the very malleable premature head rather quickly) or bad variety in repositioning after birth. The last two are considered 'fixable' with positioning or corrective devices, but if it's caused by inuterine positioning the bones grew that way and the chances of fixing it are very low.
But just because other babies have it and have left it go untreated, doesn't mean you should let your baby go undiagnosed. In cases of scapho, it may be craniosyntosis, which means the sutures of the skull are closing way too early to allow proper growth of the brain, and you'd need to have cat scans to have it diagnosed if it was cranio, and you would need surgery to correct it. Cranio is pretty rare though, so in Angel's case if it's to an extreme that she noted it would most likely be scapho. Yes there's going to be a lot of children who have this who didn't get diagnosed, with the prevalance of the Back to Sleep campaign as well as uneducated doctors and home nurses (uneducated on this topic at least, I'm doing a campaign to create awareness through general pediatricians and nurses here, and the general answer I'm getting is "plagio wha huh?" mhm, I thought so.) but with those two factors a lot of children who needed treatment are having it go by them.
On the website there's 3000 people there. All who faced major opposition from other parents, who were told 'hey it's not a big deal', who faught their doctors for referrals to the right people and faught their insurance companies, and ended up fixing something that could have caused problems later on for their children. Each case is different, and not all cases will need repositioning or corrective devices, but each case no matter how minute it may seem to other people, should get at least diagnosed. If you think your child has an off shape or one of the above disorders, you can even go to the yahoo group and post pictures of your childs head shape and get the opinions of people who have been there done that and seen it all.
The people on that site, actually know more about it then most doctors ever could - there's actually a list of neurologists that even visit the site for information ;)
"OMG my daughter has that" sounds like panicking to me... I've read about this subject after spending HOURS upon hours in the N.U. And it IS true that some ppl are told to not worry about it but in fact the third head shape although its is extreme is a common head shape... in fact if you shaved your head you'd probably have the same... unless you stare at that photo and realize that it is a extreme variation of the head shape. Also her daughter is a preemie which has a set of factors that my daughters team of dr's said have to be evalutated.
So that was why I told her not to worry just to bring up her concerns to her ped. and she was he says. Also isn't her daughter *counts* barely two months? I'm tired lol... so her skull is still moving a loooot if you remember that period your kids head grows a loooots between 2 and 4 mons.
I'm not telling her to shrug it off I'm telling her not to rush her kid to the ER.
<3
I told her not to panic. Also you're general doctor is not qualified to even make a diagnosis, so on top of her going to her doctor she'd have to get a referral from someone who can diagnose it. If I shaved my head, it wouldn't look like that, I have pretty bad plagiocephaly myself, I have a big ole lump head and I have all the medical problems associated with it (TMJ, eye problems, asymmetrical features and poor eyesight) :) Yes, her daughters skull will grow in the next few months very rapidly but won't generally change shape unless pressure is put on one spot to remold it, just size. I'm more concerned because it could be craniosyntosis, in which correction is needed *before* the skull starts to harden too much, aka as early as possible.
But this is getting very unproductive, I'm not going to argue over who knows what and where ya learned it, I'm glad you read up on it and I was never doubting what you know, and I do know what I'm talking about as well as I'm actively involved with hospitals, doctors and cranial tech itself in spreading awareness and knowledge on the subject. So we both know our stick, let's leave it at that and not derail the thread from what it's meant to be. Angel, take action and be concerned but don't panic about it, ask your doctor for a referral to the doctors I gave you up there, because it is something that needs attention. I'm leaving it at that, but yes she's right, anyone reading this if you notice this in your kid, don't panic at all, just contact your doctor and get a referral. And remember, your normal doctor, nor anyone at the hospital unless they specialize in cranial orthotics, is qualified to diagnose even though they may try ;) Don't listen to them and get a referral to people who know what they're talking about by experience.
I think I said more than one time that it was my daughter's neurologists, that told me that:) Not her ped. And in fact my daughter goes to Children's Hospital in Cinci... where Angel is from...
I'm not arguing I'm saying that I believe you're overly concerned.
/end
ARGH. That wasn't even directed to you Jamie, I was just telling Angel to make sure she sees a neurologist and not her doctor, I'd appreciate it if you address all problems or misunderstandings with me in PM's and leave this thread for what it's meant for.
EVERYONE READING THIS: Contacting a neurologist isn't being overly concerned, in a situation like this you have to be pushy and fiesty to get what you want, because everyone takes a blase' attitude about it. If anyone wants a report done by the american academy of pediatrics regarding the seriousness of plagiocephaly, scaphocephaly or brachycephaly, location of qualified doctors near you, or any other information, please PM me and I'll do my best to accomodate you and your needs.
Hey, I'd rather spend the $15 and take her to the neurologist and be safe. I don't want this to turn into a major prob later. Naivete is just trying to help people, let her!! If she hadn't said anything, my baby could've had her prob overlooked. If you don't want to treat your kid, fine, but don't try to talk me out of treating mine.
I'm NOT I'm trying to say that it is not a problem that you need to rush to the neurologists for! They won't even SEE you! You have to be referred by your ped first I KNOW this in Ohio and Cinci as for other cities I do not know. I was merely trying to point out that your child still has time to "round out" and that I'd call the ped. first because 1.) you will only talk to a neuro's NURSE'S SEC! and 2.) Because in Cinci Peds as most places ARE trained to look for these things!
Don't believe me? Go to children's hospital and pick up the pamplet on it! Its in the waiting room. It states please talk to your Ped. they will be able to refer you to the proper specialists!
gah I'm DONE!
I would hope so because if you read my posts over I was just saying not to go to a general doctor for a DIAGNOSIS, but to get a referral to a neurologist. In a survey done of 3000 people who have children with plagio, brachy or scapho, only 4% of people actually had their kids heads 'round out'. It's a pretty big myth, kids heads won't 'round out' unless you're taught agressive repositioning by a specialist. I can link whoevers interested in seeing that survey by PM.
Well, I have a great ped, and if I ask for a referral he will give it to me, even if he dosen't think my kid has the prob, just to be safe! He's sent Jenna to Childrens several times for several different things. Usually he is right about what it is and isn't, but sometimes he isn't right, and it's a good thing he gave the refferal. Getting a referral for me is no prob, and I plan on getting it on Friday when Kayla has her next appt.
i dont know if im being paranoid or what,but i think my kiddos head is shaped a little flat.you can barely tell but maybe i can because when she was born she had i swear a perfect round head,and now well it doesnt look like that nemore.she has spent a lot of time in her bouncer,and her swing because of the fact that my oldest wouldnt really let me hold her too much when she was younger.now shes very active and that only lasted a while but she is still used to falling asleep in her swing and i think that maybe thats doing something,i dont know.sometimes i feel so guilty for putting her in there,but she wont go to sleep anywhere else unless i put her in there.im going to make an appointment soon for her shots and i am planning on asking the doctor about that,but what do i say/ask?i go to a clinic and it seems like they really dont know what they are doing,will they just disregard my question and not pay attention?thats what im worried about...thanks girl....i want to read up on this but ill have to later because with school n all i am real tired,please let me know.
Don't be too worried about it, if it's just a minor flat spot then it should be fine (as long as you stop overusing the swing/carseat/stroller, if you keep that up it will just get worse) and if you go to a few of the links I put up (I think there's a CAPPSKIDS plagio prevention handout link) there's some tips on repositioning for minor cases and minor flat spots. If it's starting to throw the ears off alignment (if one seems further ahead then the other) or if one side of the forehead seems larger, or one cheek and eye is larger then the other, then it's a more serious case.
It's hard to selfidentify, but look at the following sheet and bring it in with you to the clinic. Sit down with your doctor and decide what # your childs head would be at. Usually a #2 is moderate and neurologists would then ask for a referral to be made to them. If it's closer to #3, then it definitely needs correction by a neurologist.
http://www.cranialtech.com/medicalinfo/assessment/plagiocephaly.pdf
If it's slight (say a 0-1) then just aggressive repositioning would work.
For tips on repositioning, you can join the yahoo plagiocephaly group (it is a GREAT spot for information and support, on repositioning or corrective devices)
http://health.groups.yahoo.com/group/Plagiocephaly/
Once you join, you can go to:
-> Files
-> Repositioning Headquarters
-> Repositioning Information and Strategies
and there's a ton of information about aggressive repositioning strategies.
thanks girl.no more swing for this baby over here!you can barely barely tell,im still going to rbing it up w the doctor thought,thanks again!
Bumpity bump. I like the pics in this one.
Did you get the referral? is everything okay with that. Just thinking about you.
and the thread was bumpin bumpin..
and again.