Re: Were any of your children misdiagnosed with cranial synostosis

[Guest guest]

Hi ... One of my twin boys, Ignacio, also has moderate plagio.

When his CT came back the reading suggested that his right lambdoid

suture was prematurely closed which meant a craniosynostosis

diagnosis. When the specialist saw the CT films he concluded that

we had plagio, not cranio. The problem with Ignacio is that one of

his plates is overlapping the other and the sutures are pushed

inward instead of outward causing the misreading. I really don't

know how common is to confuse one condition with the other but I

guess that it all depends on the quality of the study and the

position of his skull plates.

Annie

Mom to twins, Ignacio (DOC 12/2/03 & 2/17/04) &

San , PR

--- In Plagiocephaly , " " <marykelly1512@s...>

wrote:

> Hi, I just joined. My son was dianosed with cranial synostosis

but

> after a second and third opinoin he has mild to moderate

positional

> plagiocephaly. I want to know if this is a common misdiagnosis or

if

> it is odd?

>

> Thanks

>

>

[Guest guest]

Hi ,

Welcome to the group. What an emotional rollercoaster you have been

on! I'm so glad you got a second and third opinion and that the

news you got was such a relief. I've been around the board a little

over a year now and I've definitely heard this story a few times.

I'm not sure how common it actually is though. It seems it's often

related to poor quality imaging. How old is your son? Is he in a

helmet now?

, mom to Hannah, DOCband #3 3/30

Cape Cod, Ma

--- In Plagiocephaly , " " <marykelly1512@s...>

wrote:

> Hi, I just joined. My son was dianosed with cranial synostosis

but

> after a second and third opinoin he has mild to moderate

positional

> plagiocephaly. I want to know if this is a common misdiagnosis or

if

> it is odd?

>

> Thanks

>

>

[Guest guest]

I read something online recently that suggested that this happens much

more often than you'd think. I'm glad to hear that the 2nd and 3rd

opinions ruled it out and that your son didn't have to endure

unnecessary surgery.

Connor (6 mo. - tort/plagio)

St. Louis, MO

> Hi, I just joined. My son was dianosed with cranial synostosis but

> after a second and third opinoin he has mild to moderate positional

> plagiocephaly. I want to know if this is a common misdiagnosis or if

> it is odd?

>

> Thanks

>

>

[Guest guest]

Hi,

We have had a couple of members whose babies have been misdiagnosed.

If you're still not comfortable maybe you should see specialist that

is very familiar with cranio? Keep us posted.

--- In Plagiocephaly , " " <marykelly1512@s...>

wrote:

> Hi, I just joined. My son was dianosed with cranial synostosis but

> after a second and third opinoin he has mild to moderate positional

> plagiocephaly. I want to know if this is a common misdiagnosis or

if

> it is odd?

>

> Thanks

>

>

[Guest guest]

,

Welcome to the group! I'm so glad you have received some

informative replies on your question - I don't have any personal

experience with a misdiagnosis of cranio, but have read posts where

there certainly has been some confusion between cranio and plagio.

How old is your son? Are you currently attempting repositioning or

helmeting/banding therapy for your son's plagio? Please let us know

if we can be any help to you,

Take care,

Christie (Mom to Repo'd Remy)

--- In Plagiocephaly , " " <marykelly1512@s...>

wrote:

> Hi, I just joined. My son was dianosed with cranial synostosis

but

> after a second and third opinoin he has mild to moderate

positional

> plagiocephaly. I want to know if this is a common misdiagnosis or

if

> it is odd?

>

> Thanks

>

>