Re: Posterior plagiocephaly/Early skull fusion

[Guest guest]

There is a website specifically for craniosyntosis. It is

http://www.cappskids.org/ I believe there is a discussion group on

there. I have heard that the only option for correction Cranio is

surgery. I believe (but not sure) that many kids with cranio also

need a band/helmet after surgery. Unfortunately, I don't have a

whole lot of answers for you. Hopefully, someone else here or on

the Capps side can assist you further.

PS: If it is just plagiocephally and no cranio, then surgery is not

necessary. Plagio (what most of the kids here have) can be

corrected with a band and most babies adjust perfectly fine to the

band. If a band is needed, then I would band sooner than later as

growth is at its fastest the younger the child. Here is Cranial

Tech's website. http://www.cranialtech.com/ They are the leaders

in the banding/helmet area and I can highly recommend them as my son

wore a band 7.5-9.5 months.

>

> Hi everyone. Freaked out father here, and I am looking for some

> insight on what has become the biggest issue in my life right now.

>

> My six month old son just went for his 6 month wellness.

> After measuring his skull and double checking the chart, the doc

> declares that his head hasn't grown since the last visit. After

> feeling around a little bit he states that he thinks 's

skull

> plates may have fused early and that he may have Craniosynostosis.

> Looking at some of the example I have found online it looks like

> posterior plagiocephaly. went for his head xray today and

we

> should have the results tomorrow.

>

> So, my question is this. Has anyone in the group had this issue

with

> their child? It looks to me like the only option is surgery. Is

that

> the case? What is the recovery time like? I am located in central

Ohio

> so if there are any locals with some doc suggestions, that would be

> appreciated too. Any help would be greatly appreciated.

>

> Thanks!

>

>

>

>

[Guest guest]

Hi ,

How did your son's X-ray results come back?

>

> Hi everyone. Freaked out father here, and I am looking for some

> insight on what has become the biggest issue in my life right now.

>

> My six month old son just went for his 6 month wellness.

> After measuring his skull and double checking the chart, the doc

> declares that his head hasn't grown since the last visit. After

> feeling around a little bit he states that he thinks 's

skull

> plates may have fused early and that he may have Craniosynostosis.

> Looking at some of the example I have found online it looks like

> posterior plagiocephaly. went for his head xray today and

we

> should have the results tomorrow.

>

> So, my question is this. Has anyone in the group had this issue

with

> their child? It looks to me like the only option is surgery. Is

that

> the case? What is the recovery time like? I am located in central

Ohio

> so if there are any locals with some doc suggestions, that would be

> appreciated too. Any help would be greatly appreciated.

>

> Thanks!

>

>

>

>

[Guest guest]

They did come back and according to the nurse they were " normal " . She

then tells us that the doc would see us again at the next wellness

visit. Needless to say they answer didn't sit well with us. To get us

all in a panic by sending us out for an immediate x ray, then telling

us everything was now good seemed a bit odd.

We have a face to face visit scheduled with the doc on the 19th just

to ask all of the questions that are going through our heads. What is

our next step if his head still hasn't grown since last visit? His

little head is still misshapen. Do we continue to let him " grow out of

it " as suggested in the past or start to consider a band?

Now it's a waiting game. Waiting to see if his head start growing

again and waiting to see what the doc tells us. To be absolutely

honest, I kind of wish it would of been an early fusing of the plates.

At least then we would have something to point to.

Thankfully his development in all areas seems to be on target.

Mentally he seems to be doing all the things you would expect a 6 mo

to do. He is just a little guy with a slightly misshapen head.

> >

> > Hi everyone. Freaked out father here, and I am looking for some

> > insight on what has become the biggest issue in my life right now.

> >

> > My six month old son just went for his 6 month wellness.

> > After measuring his skull and double checking the chart, the doc

> > declares that his head hasn't grown since the last visit. After

> > feeling around a little bit he states that he thinks 's

> skull

> > plates may have fused early and that he may have Craniosynostosis.

> > Looking at some of the example I have found online it looks like

> > posterior plagiocephaly. went for his head xray today and

> we

> > should have the results tomorrow.

> >

> > So, my question is this. Has anyone in the group had this issue

> with

> > their child? It looks to me like the only option is surgery. Is

> that

> > the case? What is the recovery time like? I am located in central

> Ohio

> > so if there are any locals with some doc suggestions, that would be

> > appreciated too. Any help would be greatly appreciated.

> >

> > Thanks!

> >

> >

> >

> >

>

[Guest guest]

Hi Nick:I'm glad that the xrays came back normal! If there is no doubt, then the CT scan probably won't be necessary. In terms of "next steps" that will be totally up to you and your wife, and what you are comfortable with. I know you said that his head hasn't grown much -- but in that time, did it change in mishapen-ness? That will affect some of the measurements that they do. First and foremost will be to determine if there is an issue in that department, of course. Since each person doing measurements is different, and depending on how much the baby moved, could skew the results, but it might just be something to keep an eye on. Does he have torticollis? (does he favor looking one way only -- can be corrected with exercises/PT http://www.torticolliskids.org/ )At 6 months -- trying to reposition him constantly may be a challenge, bu

t it can be one of your options -- at least while you are deciding if any other form of treament is necessary. Most pediatricians, unless they are well-versed in plagiocephaly, will tell you to "wait" -- the question then, is how long, until other treatment should be attempted? There is only a short window before a child's head doesn't have good results with molding therapy (though some companies do mold up to 18-24 months, usually the rate of growth is slower for the child, and thus, the amount of correction is not as much as it would be when the child was younger. So.... if nothing changed in the next 12 months, and your son's headshape stayed the same, or improved just slightly, how would you feel about that? If it's something hair, etc. will cover, it might not be an issue for you at all, except seeing it as it is now. If it affects part of the head/face (assymetrical ears, eyes, forhead bossing), then it might be more of an issue for you.Unfortunately, many doctors do NOT know a lot about different types of molding therapies, and it will not be the first thing that they recommend, and they might even be skeptical about it when they hear about it. If you think you want to go the molding device route (helmet or band, depending on what is close to you or what you are comfortable with, etc.), then I suggest getting as much information as possible from the area providers, and taking that with you in a folder just in case. Sometimes it can take 4 or more weeks to be approved or denied before you can start treatment (don't attempt treatment before this, or you can be denied for not following the correct procedure (waiting for notice)), so that is something to think about in shaping how you want to discuss this with your pediatrician. Banding/helmet therapy might not be something you are considering at all -- but I wanted to give you a little information about the things you might

encounter with your pediatrician, mainly, that he/she may NOT have any answers for you at this time. So the more information you have to form questions, the better.Good luck!mom to Quinn, born 11/99, DOCband grad 10/00 for scaphocelpahic head shape>------- Original Message ------->From : Nick Papagiorgio[mailto:gobux_1996@...]>Sent : 2/9/2008 11:05:48 AM>To : Plagiocephaly >Cc : >Subject : RE: Re: Posterior plagiocephaly/Early skull fusion>>They did come back and according to the nurse they were "normal". Shethen tells us that the doc would see us again at the next wellnessvisit. Needless to say they answer didn't sit well with us. To get usall in a panic by sending us out for

an immediate x ray, then tellingus everything was now good seemed a bit odd.We have a face to face visit scheduled with the doc on the 19th justto ask all of the questions that are going through our heads. What isour next step if his head still hasn't grown since last visit? Hislittle head is still misshapen. Do we continue to let him "grow out ofit" as suggested in the past or start to consider a band?Now it's a waiting game. Waiting to see if his head start growingagain and waiting to see what the doc tells us. To be absolutelyhonest, I kind of wish it would of been an early fusing of the plates.At least then we would have something to point to.Thankfully his development in all areas seems to be on target.Mentally he seems to be doing all the things you would expect a 6 moto do. He is just a little guy with a slightly misshapen head. > >> > Hi everyone. Freaked out father here, and I am looking for some> > insight on what has become the biggest issue in my life right now.> > > > My six month old son just went for his 6 month wellness.> > After measuring his skull and double checking the chart, the doc> > declares that his head hasn't grown since the last visit. After> > feeling around a little bit he states that he thinks 's > skull> > plates may have fused early and that he may have Craniosynostosis.> > Looking at some of the example I have found online it looks like> > posterior plagiocephaly. went for his head xray today and &gt

; we> > should have the results tomorrow. > > > > So, my question is this. Has anyone in the group had this issue > with> > their child? It looks to me like the only option is surgery. Is > that> > the case? What is the recovery time like? I am located in central > Ohio> > so if there are any locals with some doc suggestions, that would be> > appreciated too. Any help would be greatly appreciated.> > > > Thanks!> > > > > > > >>For more plagio info