I just wanted to send a warning in lack of better terms.

[Guest guest]

Im a mommy of an almost 2 year old boy who was originally diagnosed with

plagiocephaly at the age of 6 months. He even had a CT scan and everything to

rule out other things. My husband and I bought him a helmet from the advice of

his dr. Come to find out, he was diagnosed wrong all along. the helmet atcually

made his head worse. After 3 months with the helmet, I followed mothers instinct

and gave up on the helmet and went to St louis childrens hospital for a better

opinion. They did a CT scan where we found out it was a premature lamdoid suture

closure that was causing his head to be deformed. We were heartbroken that it

took us to where he was almost a year old before we found out the misdiagnosis.

Mainly because i knew in my heart that there was something more to it. Sorry to

make this so long, but i just want to make other parents aware of our situation

to avoid this from happening to others. FOLLOW YOUR MOMMY INSTINCT! GET A 2nd or

3rd opinion if you have to. Thankfully, my little baby had surgery in November

2009 and it was a complete success. His head looks amazing from where it used to

be and is developing completely on track. Good luck to you all.

[Guest guest]

Thank you for your post. Glad your LO is doing well.

Do they know why the first CT missed the suture closing?

>

> Im a mommy of an almost 2 year old boy who was originally diagnosed with

plagiocephaly at the age of 6 months. He even had a CT scan and everything to

rule out other things. My husband and I bought him a helmet from the advice of

his dr. Come to find out, he was diagnosed wrong all along. the helmet atcually

made his head worse. After 3 months with the helmet, I followed mothers instinct

and gave up on the helmet and went to St louis childrens hospital for a better

opinion. They did a CT scan where we found out it was a premature lamdoid suture

closure that was causing his head to be deformed. We were heartbroken that it

took us to where he was almost a year old before we found out the misdiagnosis.

Mainly because i knew in my heart that there was something more to it. Sorry to

make this so long, but i just want to make other parents aware of our situation

to avoid this from happening to others. FOLLOW YOUR MOMMY INSTINCT! GET A 2nd or

3rd opinion if you have to. Thankfully, my little baby had surgery in November

2009 and it was a complete success. His head looks amazing from where it used to

be and is developing completely on track. Good luck to you all.

>

[Guest guest]

Thanks for your story. I will pray for your family and hope your story will help

someone.

>

> Im a mommy of an almost 2 year old boy who was originally diagnosed with

plagiocephaly at the age of 6 months. He even had a CT scan and everything to

rule out other things. My husband and I bought him a helmet from the advice of

his dr. Come to find out, he was diagnosed wrong all along. the helmet atcually

made his head worse. After 3 months with the helmet, I followed mothers instinct

and gave up on the helmet and went to St louis childrens hospital for a better

opinion. They did a CT scan where we found out it was a premature lamdoid suture

closure that was causing his head to be deformed. We were heartbroken that it

took us to where he was almost a year old before we found out the misdiagnosis.

Mainly because i knew in my heart that there was something more to it. Sorry to

make this so long, but i just want to make other parents aware of our situation

to avoid this from happening to others. FOLLOW YOUR MOMMY INSTINCT! GET A 2nd or

3rd opinion if you have to. Thankfully, my little baby had surgery in November

2009 and it was a complete success. His head looks amazing from where it used to

be and is developing completely on track. Good luck to you all.

>

[Guest guest]

I remember following a citation on the Cranial Tech website that

seemed to be about the difficulty in differentiating the two

problems, even with a CT scan.

http://www.ncbi.nlm.nih.gov/pubmed/8841076

Do you think it would it be fair to say that the lack of growth in

that area over a long period of time colored the view of the second

scan?

The point being, I'm not sure there's anything different you should

have done. It seems like the only alternative would have been to go

straight to the neurosurgeon for a flat spot in the lambdoid area.

But wouldn't most of us be willing to accept the deformity evident at

that early stage, next to the risks of surgery?

(Is your story in the archives? What were the measurements or

severities at 6 and 9 months?)

The lesson I'm taking from this, personally, is the importance of

follow up when helmets don't work. Guess I'd better get back on the

phone to see if my family doctor has done his craniometry research

yet. I'm pretty sure her head is growing everywhere, but we still

don't have final measurements on Clara!

--

Thad Launderville

town, VT

Clara age 2, STARband '10

On Aug 19, 2010, at 4:50 PM, kmelanson06 wrote:

> Im a mommy of an almost 2 year old boy who was originally

> diagnosed with plagiocephaly at the age of 6 months. He even had a

> CT scan and everything to rule out other things. My husband and I

> bought him a helmet from the advice of his dr. Come to find out, he

> was diagnosed wrong all along. the helmet atcually made his head

> worse. After 3 months with the helmet, I followed mothers instinct

> and gave up on the helmet and went to St louis childrens hospital

> for a better opinion. They did a CT scan where we found out it was

> a premature lamdoid suture closure that was causing his head to be

> deformed. We were heartbroken that it took us to where he was

> almost a year old before we found out the misdiagnosis. Mainly

> because i knew in my heart that there was something more to it.

> Sorry to make this so long, but i just want to make other parents

> aware of our situation to avoid this from happening to others.

> FOLLOW YOUR MOMMY INSTINCT! GET A 2nd or 3rd opinion if you have

> to. Thankfully, my little baby had surgery in November 2009 and it

> was a complete success. His head looks amazing from where it used

> to be and is developing completely on track. Good luck to you all.

[Guest guest]

Looking at more recent articles, it does appear that " controversy "

has been replaced with fairly clear differential guidelines and

better technology.

http://www.ncbi.nlm.nih.gov/pubmed/11197708

http://www.aafp.org/afp/2004/0615/p2863.html?ref=Yapma.net

(Fig. 2)

http://prayersforlandon.blogspot.com/2010/06/before.html

(a parent blog with " before " pictures)

So one wonders, how *do* these misdiagnoses occur? Is it just an

unfortunate coincidence of plagio and cranio, such that the

" contralateral frontal bossing " (trapezoid shape) of the latter is

not evident? How long can it remain hidden like that?

--

Thad Launderville

town, VT

Clara age 2, STARband '10

On Aug 23, 2010, at 2:23 PM, Thad Launderville wrote:

> I remember following a citation on the Cranial Tech website that

> seemed to be about the difficulty in differentiating the two

> problems, even with a CT scan.

> http://www.ncbi.nlm.nih.gov/pubmed/8841076

>