Re: new Positional Plagiocephaly diagnosis

[Guest guest]

Hi Ally,

first the CT scan is a good idea, but plagio is much more likely than

craniosynostosis (fused skull). If it is cranio then surgery is generally needed

and recovery is generally very quick. Babies heal fast. There is a group that

deals more directly with cranio - cappskids.org. They have more info and support

for families with cranio. Most people in this group are lucky enough to rule out

cranio and generally end up with a band/helmet to help reshape the head.

So don't worry too much before the CT scan. In the meantime you can try to keep

him off his head where it is flat to help it round out (assuming it isn't

cranio) and learn a bit about banding. You want to keep him out of swings,

bounces, car seats etc as much as possible (obviously you need the car seat in

the car, but not for naps, stroller rides etc.). Carry him or have him sit on

his own as much as possible. Also when he is resting on his head keep him off

the flat part and on the prominent part to the extend possible.

My daughter had a very flat head mostly because she grew fast and I didn't know

enough about keeping her off the same spot. She got a lot of correction from her

band.

When is his CT scan? keep us posted and all the best.

-christine

sydney, 4.5 yrs starband grad

>

> Hello,

> I am new to this forum and was hoping I might be able to get some helpful

information about treatment for Plagiocephaly. Perhaps the information I am

seeking can already be found in this forum, so I apologize if I'm posting my

question prematurely.

>

> My son is 9 months old and has a VERY flat head. The doctor told me today

that he wants a CT scan to see if my son's plates have fused together and if

they have, wants to do a surgery of some kind to break them. He acted like it

wasn't a big deal and said the babies he's worked with on this have recovered

successfully, but I am hesitant to feel too happy about anyone breaking my son's

skull unless it is absolutely necessary for healthy brain development.

>

> I've read a little about treatments for this condition and it sounds like this

surgical procedure recommended by my doctor isn't necessarily encouraged

anymore. Is my doctor outdated (although, he's probably only 40 years old

himself)? What are the main concerns involved in the medical procedure to break

apart skull plates? What are the outcomes and risks?

>

> If anyone has any medical resources they can direct me to about this procedure

or research that discourages it, I'd be so very appreciative. I truly just want

my son to be ok and don't want to jump into a medical procedure that might not

be good for him. Obviously a second opinion will be in order after the CT scan,

and a referral to a specialist. But I'd like to go into these appointments

relatively informed so I can advocate for my son to receive appropriate

treatments for his condition.

>

> Thank you for any time you have to help me out!

>

> Ally

>

[Guest guest]

I'd advise seeing the specialist (neurosurgeon) BEFORE having your

doctor(Pediatrician?) order a CT Scan. The reason being that Ped's

don't diagnose Craniosynostosis. I'd be surprised if he has seen more

than a few cases of it in his career. From what I've read, it seems as

though most experienced neurosurgeons can simply examine the head and

determine if cranio is suspected or not. Many can diagnose it just by

looking at the head. If the Neuro suspects Cranio, THEN he may want to

have a CT scan. But I wouldn't jump to have the CT prior to having the

neuro examine your child. The reason being that CT's are not benign

medical procedures; they come with a whole set of risks themselves.

(exposure to massive amounts of radiation and sedation/general

anesthesia). So don't jump the gun too quickly on this one. It would

be a shame to go through this type of procedure unless it was totally

necessary.

> >

> > Hello,

> > I am new to this forum and was hoping I might be able to get some

helpful information about treatment for Plagiocephaly. Perhaps the

information I am seeking can already be found in this forum, so I

apologize if I'm posting my question prematurely.

> >

> > My son is 9 months old and has a VERY flat head. The doctor told me

today that he wants a CT scan to see if my son's plates have fused

together and if they have, wants to do a surgery of some kind to break

them. He acted like it wasn't a big deal and said the babies he's

worked with on this have recovered successfully, but I am hesitant to

feel too happy about anyone breaking my son's skull unless it is

absolutely necessary for healthy brain development.

> >

> > I've read a little about treatments for this condition and it sounds

like this surgical procedure recommended by my doctor isn't necessarily

encouraged anymore. Is my doctor outdated (although, he's probably only

40 years old himself)? What are the main concerns involved in the

medical procedure to break apart skull plates? What are the outcomes and

risks?

> >

> > If anyone has any medical resources they can direct me to about this

procedure or research that discourages it, I'd be so very appreciative.

I truly just want my son to be ok and don't want to jump into a medical

procedure that might not be good for him. Obviously a second opinion

will be in order after the CT scan, and a referral to a specialist. But

I'd like to go into these appointments relatively informed so I can

advocate for my son to receive appropriate treatments for his condition.

> >

> > Thank you for any time you have to help me out!

> >

> > Ally

> >

>