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Craniosynostosis

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ann,

A plastic surgeon would be able to tell if it is cranio or plagio by reading

CT scans or x-rays. That is really the only way to be sure. It is true that

plagio is sometimes diagnosed and later it is discovered to be cranio. This

is rare, but it does happen. If you want to be sure then check with the

plastic surgeon to see if he will order x-rays or tell you exactly how he

ruled out cranio. I think it is worth the call if you are concerned. My

daughter did have a CT scan done to rule out cranio and the reading my

specialist did helped to overturn the insurance company's denial.

Marci (Mom to )

Oklahoma

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I've been reading articles from CT and they talk about positional plagiocephaly

being misdiagnosed as craniosynostosis. Call me paranoid but I wonder if the

opposite ever happened. How do you know if it is craniosynostosis and

not positional plagiocephaly? The article talks about pediatric neurosurgeons

making diagnoses. I did not take to a neurosurgeon, just to a plastic

surgeon. No

CT scans or x-rays were taken so how would they know it is pp rather than

craniosynostosis? Oh the worry never ends.... It is so hard to trust doctors

these days. I'm wondering if I should get a second opinion from a neurosurgeon.

ann/

NJ

Plagiocephaly wrote:

>

> For more plagio info

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ann,

My ped. sent for a CT scan and to a ped neurosurgeon because

she was having bouts of rapid head growth and she wanted to rule out

cranio. I think maybe you should ask your ped. for a referral to a

ns. If only to put your mind at ease. That's what I would do if I

were you.

>

> >

> > For more plagio info

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ann,

The joys of motherhood, and all the worries that come with it, never

end!! There have been a few cases, that I am aware of, where the

child was diagnosed with pos. plagio, when it was in fact cranio.

But cases like that are extrememly rare.

I took my twins to a neurosurgeon, but they didn't get any x-rays, or

ct scans. The neuro was able to tell, just by feeling, that all the

sutures were still open. Its very possible that 's plastic

surgeon was able to do the same. However, if you are uneasy about

not having any scans or x-rays done, then ask your ped to write a

prescription for one. Its always better to be safe than sorry!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> I've been reading articles from CT and they talk about positional

plagiocephaly

> being misdiagnosed as craniosynostosis. Call me paranoid but I

wonder if the

> opposite ever happened. How do you know if it is craniosynostosis

and

> not positional plagiocephaly? The article talks about pediatric

neurosurgeons

> making diagnoses. I did not take to a neurosurgeon, just

to a plastic surgeon. No

> CT scans or x-rays were taken so how would they know it is pp

rather than

> craniosynostosis? Oh the worry never ends.... It is so hard to

trust doctors

> these days. I'm wondering if I should get a second opinion from a

neurosurgeon.

>

> ann/

> NJ

>

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  • 7 years later...

Hello Kate,

My name is Rosemary and my oldest son who is now 14 yrs old had craniosynostosis when he was 3 months old. My son did have the surgery done at the age of 6 months and was in the hospital for a few weeks to recover, he didn't have to wear a helmet afterwards but the doctors advised me that he would have some sort of developmental issues but till this day he is a very smart boy. I was torn when I found out about it and was unsure about the surgery but when they explained to me what his forehead would look like if he didn't get the surgery I just couldn't imagine not correcting the problem. Needless to say, he recovered very well from the surgery and he is now playing high school football. So I say that you and your daughter will be fine, everything will work out. Just make sure that you ask questions in regards to the type of surgery sthat they will be conducted on your daughter so that you completely understand what they will be doing. I wish

you all the best and please keep me posted. Take Care

Rosemary Avila in AZ

mother of Shaw 11 months old (DOC band for a month now)

From: rtkate <rtkate@...>Plagiocephaly Sent: Wed, December 9, 2009 11:34:19 AMSubject: Craniosynostosis

I got the news the other day I was dreading. My 2 1/2 month old daughter Gwen has craniosynostosis. I know this group is for positional plagio, but does anyone here have expreience with Cranio? My daughter will be seen at Childrens Hospital in Philly in 2 weeks and will probably be having surgery and I imagine a helmet afterwards. She has one suture closed and I am hoping it's not too complex a surgery..My son had misshaping and had a helmet from tort so I was hoping her flatness was caused by womb positioning. ..but here we are. I'm overwhelmed to say the least, but I'm glad I had a lot of knowledge about plagio that I pointed this out to her doctor asap and got the needed tests. Kate

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