Re: Anyone here who has a child diagnosed with lambdoid synostosis?

[Guest guest]

We had to have a CT scan when my son was about 2 weeks old to rule out sagittal

craniosynostosis. Even though the doc could see

a soft spot at the top of his head, they wanted to rule it out. (He was breech

and large, and also (we found out several years

later) has low muscle tone).

Some doctors do order CTs, others don't. If you have questions about this

definitely ask your doctor.

Also, there is another website that is a chat/support group for parents with

kids with cranio and plagio -- it's called CAPPSkids

(Craniosynostosis and Positional Plagiocephalyy Support) -

http://www.cappskids.org/ and it's free to join so that you can post

questions there, too.

Yake care.

, mom to Quinn, born 11/99, DOCband grad for scaphocephalic head shape

10/00

>------- Original Message -------

>From : Christian Inton[mailto:chrisinton@...]

>Sent : 7/7/2008 6:59:17 AM

>To : Plagiocephaly

>Cc :

>Subject : RE: Anyone here who has a child diagnosed with lambdoid

synostosis?

>

>Just wondering if any parent here has a child who was diagnosed with

the supposedly rare lambdoid synostosis and not plagiocephaly. Can you

share your experience on diagnosis and what treatment options you sought?

Also, for parents who had the band, did all of you had a CT scan or

MRI to rule out synostosis first before you had the band done for

your child? I'm looking at some pics on the net and found that some

pics with plagio and lambdoid synostosis can look very similar.

Thanks,

Chris

------------------------------------

For more plagio info

[Guest guest]

It may vary by doctor, but our pediatrician first sent us to a neurologist to rule out premature suture fusion, then we went to Cranial Tech.Good luck!Sandymom to Lyla (7months) 1 month in Doc Bandand Owen 4 Anyone here who has a child diagnosed with lambdoid synostosis?

Just wondering if any parent here has a child who was diagnosed with

the supposedly rare lambdoid synostosis and not plagiocephaly. Can you

share your experience on diagnosis and what treatment options you sought?

Also, for parents who had the band, did all of you had a CT scan or

MRI to rule out synostosis first before you had the band done for

your child? I'm looking at some pics on the net and found that some

pics with plagio and lambdoid synostosis can look very similar.

Thanks,

Chris

[Guest guest]

I have never heard of this. How did you find out about it?

From: Christian Inton <chrisinton@...>Subject: Anyone here who has a child diagnosed with lambdoid synostosis?Plagiocephaly Date: Monday, July 7, 2008, 5:59 AM

Just wondering if any parent here has a child who was diagnosed withthe supposedly rare lambdoid synostosis and not plagiocephaly. Can youshare your experience on diagnosis and what treatment options you sought? Also, for parents who had the band, did all of you had a CT scan orMRI to rule out synostosis first before you had the band done foryour child? I'm looking at some pics on the net and found that somepics with plagio and lambdoid synostosis can look very similar.Thanks,Chris

[Guest guest]

My son had a CT scan done when he was around 5 months old to rule

craniosynostosis before we got our band. The plastic surgeon that wrote the

prescription for the band ordered the CT.

Molly

Novato, California

Nicolas, 2.5, tort & plagio, STARband (CIRS Oakland) 4/24/06-9/12/06,

Graduate!

, 5

, 8.5

Anyone here who has a child diagnosed with lambdoid

synostosis?

Just wondering if any parent here has a child who was diagnosed with

the supposedly rare lambdoid synostosis and not plagiocephaly. Can you

share your experience on diagnosis and what treatment options you sought?

Also, for parents who had the band, did all of you had a CT scan or

MRI to rule out synostosis first before you had the band done for

your child? I'm looking at some pics on the net and found that some

pics with plagio and lambdoid synostosis can look very similar.

Thanks,

Chris

------------------------------------

For more plagio info

[Guest guest]

My son went to see a neurologist before we banded and we did not need to have a scan of any sort just an office visit. The doctor felt his head and was able to tell us that we would be good candidates for helmet correction. We went with Cranial Tech and banded our son from 4-6 months and are very happy with the results. Hope this helps you. Good luck with everything. Tammy mother to just turned a year!

From: Christian Inton <chrisinton@...>Subject: Anyone here who has a child diagnosed with lambdoid synostosis?Plagiocephaly Date: Monday, July 7, 2008, 10:59 AM

Just wondering if any parent here has a child who was diagnosed withthe supposedly rare lambdoid synostosis and not plagiocephaly. Can youshare your experience on diagnosis and what treatment options you sought? Also, for parents who had the band, did all of you had a CT scan orMRI to rule out synostosis first before you had the band done foryour child? I'm looking at some pics on the net and found that somepics with plagio and lambdoid synostosis can look very similar.Thanks,Chris

[Guest guest]

I am not sure if you have seen us bopping around some of the other related websites/groups or if this is just some crazy coincidence. But yes we just got a diagnosis of lamboid Cranio. I should update everyone here, my son Ethan is the little guy that spent 2.5 weeks in a DOC band before Jeannie at CT said she can't make him a band due to the mastoid bulge. We went to a CF specialist who said his head will round out nicely on it's own. Then almost as an afterthought, he got us in to see a ped neurosurgeon who diagnosed the lambdoid cranio.

The folks at CT required us to get a CT Scan before treating Ethan because he had an "atypical bulge" behind his ear. The CT showed nothing. Turns out that most CT scans are done at a relatively low resolution. The neuro sent us for a 3d CT scan done at 1/2 to 1 mm (the first was done at 5mm). The results aren't in on this (later today). The CT is for our benefit, the neuro is convinced of his diagnosis. Turns out that the "atypical bulge" is quite typical for lamboid synostosis.

If you are asking for your own info, I would be happy to further discuss where we are with all this and what we've learned.

Audra

Anyone here who has a child diagnosed with lambdoid synostosis?

Just wondering if any parent here has a child who was diagnosed withthe supposedly rare lambdoid synostosis and not plagiocephaly. Can youshare your experience on diagnosis and what treatment options you sought? Also, for parents who had the band, did all of you had a CT scan orMRI to rule out synostosis first before you had the band done foryour child? I'm looking at some pics on the net and found that somepics with plagio and lambdoid synostosis can look very similar.Thanks,Chris

[Guest guest]

Hi Audra,

Yes i'm asking since my daughter had not done her 3d ct scan since we

were quite hesitant on the radiation issue with the scan. However now,

i'm not quite sure is we should've gone ahead with it. She now has a

cranial helmet done locally. You mentioned this atypical bulge behind

the ears. how does it look like? Do you have any pictures to share to

give us an idea?

Thanks,

Chris

>

>

> I am not sure if you have seen us bopping around some of the other

related websites/groups or if this is just some crazy coincidence. 

But yes we just got a diagnosis of lamboid Cranio.  I should update

everyone here, my son Ethan is the little guy that spent 2.5 weeks in

a DOC band before Jeannie at CT said she can't make him a band due to

the mastoid bulge.  We went to a CF specialist who said his head will

round out nicely on it's own.  Then almost as an afterthought, he got

us in to see a ped neurosurgeon who diagnosed the lambdoid cranio. 

> The folks at CT required us to get a CT Scan before treating Ethan

because he had an " atypical bulge " behind his ear.  The CT showed

nothing.  Turns out that most CT scans are done at a relatively low

resolution.  The neuro sent us for a 3d CT scan done at 1/2 to 1 mm

(the first was done at 5mm).  The results aren't in on this (later

today).  The CT is for our benefit, the neuro is convinced of his

diagnosis.  Turns out that the " atypical bulge " is quite typical for

lamboid synostosis. 

> If you are asking for your own info, I would be happy to further

discuss where we are with all this and what we've learned. 

> Audra

>

>

>

> Anyone here who has a child diagnosed with

lambdoid synostosis?

>

>

> Just wondering if any parent here has a child who was diagnosed with

> the supposedly rare lambdoid synostosis and not plagiocephaly. Can you

> share your experience on diagnosis and what treatment options you

sought?

> Also, for parents who had the band, did all of you had a CT scan or

> MRI to rule out synostosis first before you had the band done for

> your child? I'm looking at some pics on the net and found that some

> pics with plagio and lambdoid synostosis can look very similar.

>

> Thanks,

>

> Chris

>

[Guest guest]

First, let me say that I hope for you and your family that it's not craniosyostosis. We have since found out that the CT's are unreliable for lambdoid craniosynostosis. I can't explain exactly why but it has to do with the axis of the CT machine and the position of that particular suture. As a result it is not surprising to get a false positive or negative on the CT scan - even the 3d high res ones.

There are photo's on the group website under "our plagio babies - E". I think it's on the last page. There are 3 of them for Ethan C. The last 2 are my best attempt at showing the bulge. It's hard to photograph. When Ethan was born, he had a ridge that went diagonally down from right to left. It started at the center of the back of his head and ended behind his ear. This too is typical of lambdoid cranio.

There is another distinction between plagio and lambdoid cranio having to do with which ear is posterior. But to be honest, I am a little confused about it myself and am going to ask the neuro about it. We'll see him later this week.

Before we got this dianosis, there was some talk of this being a "mastoid bulge". The mastoid process actually sits right behind the ear and behind that is the lambdoid suture.

We went to a top notch children's hospital's cranial facial center and they too almost missed the diagnosis. So I would say if you are the least bit unsure or uncomfortable, go to a specialist and a good one (pediatric neurosurgeon). As with all of this, time is of the essence. The treatment for cranio is extremely invasive, but there is a less invasive endoscopic option for children under 6 months of age.

Does your daughter have torticollis as well?

If you let me know what region of the country you are in, I can give you some ideas of where you might want to go.

Let me know if I can answer any other questions

Audra

Anyone here who has a child diagnosed withlambdoid synostosis?> > > Just wondering if any parent here has a child who was diagnosed with> the supposedly rare lambdoid synostosis and not plagiocephaly. Can you> share your experience on diagnosis and what treatment options yousought? > Also, for parents who had the band, did all of you had a CT scan or> MRI to rule out synostosis first before you had the band done for> your child? I'm looking at some pics on the net and found that

some> pics with plagio and lambdoid synostosis can look very similar.> > Thanks,> > Chris>

[Guest guest]

Hi Audra-

Well, I'm sorry to hear about the lambdoid synostosis diagnosis. But

I guess it's good that you know what is going on.

I just wanted to mention about the posterier ear difference, I

believe (but I may be wrong) that the difference is that with

plagio, the same ear as the flat spot is posterior to the other (for

instance if it's right plagio, the right ear is more forward than

the left), but if it's cranio, the opposite ear is more posterior

(so a flat spot on the right with cranio would cause the left ear to

be more forward than the right). But I'd love it if you could verify

that and let us know when you talk to the doctor again.

Good luck with everything, and please keep us posted.

Jake-22m (tort resolved/rt plagio/DOCBand #2 5 weeks)

Jordan-4

> >

> >

> > I am not sure if you have seen us bopping around some of the

other

> related websites/groups or if this is just some crazy coincidence. 

> But yes we just got a diagnosis of lamboid Cranio.  I should update

> everyone here, my son Ethan is the little guy that spent 2.5 weeks

in

> a DOC band before Jeannie at CT said she can't make him a band due

to

> the mastoid bulge.  We went to a CF specialist who said his head

will

> round out nicely on it's own.  Then almost as an afterthought, he

got

> us in to see a ped neurosurgeon who diagnosed the lambdoid

cranio. 

> > The folks at CT required us to get a CT Scan before treating

Ethan

> because he had an " atypical bulge " behind his ear.  The CT showed

> nothing.  Turns out that most CT scans are done at a relatively low

> resolution.  The neuro sent us for a 3d CT scan done at 1/2 to 1 mm

> (the first was done at 5mm).  The results aren't in on this (later

> today).  The CT is for our benefit, the neuro is convinced of his

> diagnosis.  Turns out that the " atypical bulge " is quite typical

for

> lamboid synostosis. 

> > If you are asking for your own info, I would be happy to further

> discuss where we are with all this and what we've learned. 

> > Audra

> >

> >

> >

> > Anyone here who has a child diagnosed with

> lambdoid synostosis?

> >

> >

> > Just wondering if any parent here has a child who was diagnosed

with

> > the supposedly rare lambdoid synostosis and not plagiocephaly.

Can you

> > share your experience on diagnosis and what treatment options you

> sought?

> > Also, for parents who had the band, did all of you had a CT scan

or

> > MRI to rule out synostosis first before you had the band done for

> > your child? I'm looking at some pics on the net and found that

some

> > pics with plagio and lambdoid synostosis can look very similar.

> >

> > Thanks,

> >

> > Chris

> >

>

[Guest guest]

The 3D CT scan showed the lambdoid cranio on Ethan. I hope you are getting the answers that you need.

A

Anyone here who has a child diagnosed withlambdoid synostosis?> > > Just wondering if any parent here has a child who was diagnosed with> the supposedly rare lambdoid synostosis and not plagiocephaly. Can you> share your experience on diagnosis and what treatment options yousought? > Also, for parents who had the band, did all of you had a CT scan or> MRI to rule out synostosis first before you had the band done for> your child? I'm looking at some pics on the net and found that

some> pics with plagio and lambdoid synostosis can look very similar.> > Thanks,> > Chris>

[Guest guest]

I asked the neurosurgeon about the difference in the ear for plagio

and lambdoid cranio. He said that in plagio the ear on the same side

is pulled forward and down, but in lambdoid cranio it is pulled back

and up. He said that is what he's always written in his works, but

in the last few years it has not been holding true and that in about

50% of the lambdoid cranio cases the ear is pulled forward and down

like it is in plagio.

> > >

> > >

> > > I am not sure if you have seen us bopping around some of the

> other

> > related websites/groups or if this is just some crazy

coincidence. 

> > But yes we just got a diagnosis of lamboid Cranio.  I should

update

> > everyone here, my son Ethan is the little guy that spent 2.5

weeks

> in

> > a DOC band before Jeannie at CT said she can't make him a band

due

> to

> > the mastoid bulge.  We went to a CF specialist who said his head

> will

> > round out nicely on it's own.  Then almost as an afterthought, he

> got

> > us in to see a ped neurosurgeon who diagnosed the lambdoid

> cranio. 

> > > The folks at CT required us to get a CT Scan before treating

> Ethan

> > because he had an " atypical bulge " behind his ear.  The CT showed

> > nothing.  Turns out that most CT scans are done at a

relatively low

> > resolution.  The neuro sent us for a 3d CT scan done at 1/2 to 1

mm

> > (the first was done at 5mm).  The results aren't in on this (later

> > today).  The CT is for our benefit, the neuro is convinced of his

> > diagnosis.  Turns out that the " atypical bulge " is quite typical

> for

> > lamboid synostosis. 

> > > If you are asking for your own info, I would be happy to further

> > discuss where we are with all this and what we've learned. 

> > > Audra

> > >

> > >

> > >

> > > Anyone here who has a child diagnosed with

> > lambdoid synostosis?

> > >

> > >

> > > Just wondering if any parent here has a child who was diagnosed

> with

> > > the supposedly rare lambdoid synostosis and not plagiocephaly.

> Can you

> > > share your experience on diagnosis and what treatment options

you

> > sought?

> > > Also, for parents who had the band, did all of you had a CT

scan

> or

> > > MRI to rule out synostosis first before you had the band done

for

> > > your child? I'm looking at some pics on the net and found that

> some

> > > pics with plagio and lambdoid synostosis can look very similar.

> > >

> > > Thanks,

> > >

> > > Chris

> > >

> >

>