Re: Need Help! Diagnosed with Cranio on and off and now confirmed it's Plagio.

[Guest guest]

Well guess what? A lot has happened in 24 hours. We took my son back to the

surgeons yesterday with a list of questions and ready to express our

disappointment in their team, etc and within 30 seconds the surgeon said he had

been studying his scan and my son does indeed have Craniosynostosis (again)!

However it is one of thee most rarest forms of Cranio and he could only find 5

cases in the entire world!! It's called Frontolsphenoidal Cranio. I'd attach a

photo of his scan but not sure how to on here. It's basically these small bones

at the bottom of the coronal suture next to his eye socket. That is whats

causing the lopsided forhead, mis-aligned ears and mis-shapen eye sockets. They

said that suture can close when a lot of other sutures are closed but to just

have that one suture closed is so rare. It looks so much like coronal cranio or

severe plagio but it's not.

The surgeons were actually pretty excited about it and made us feel very

confident they can fix him. So...surgery is back on for next Tuesday 12/21! I

have to admit I was sooo relieved I almost cried of joy. Is that strange?! I

just hated not knowing what was wrong with him and I really didn't see a helmet

fixing his skull since it was such a weird shape. And the thought of a cosmetic

surgery later in life was really frightening. Now it can be fixed when he's less

than 6 mo old and not cause any more damage as his brain was pushing out on the

opposite side.

So I do urge all you mommies and daddies to definately do your research, check

your childs scans, have second or third opinions and definately be an advocate

for your baby. I can't imagine if I hadn't brought it up to the surgeons and had

them do so much extensive research way before hand. God does work in mysterous

ways!

Anyways, thanks for all the emails and support but I guess we don't belong in

the Plagio group after all. I've definately ready to get off this emotional

roller coaster and never look back!!!! Just want my precious boy to be perfectly

healthy!

Thanks again,

Summer

>

> Ok I'll try to keep this short. When my baby boy Brentley was born we noticed

his forhead was uneven. The nurses said it was from birth and would fix itself.

At his 2 month well baby check up the NP said he may have Craniosynostosis. I

went home and googled and couldn't sleep as some pictures I found looked just

like my son. I called the doctor the next day and voiced my concerns and he

ordered a CT Scan. We had the CT scan done at 2 months old and it came back as

he did NOT have cranio and that it was positional plagiocephaly. They said to

have him sleep on the bulging forehead side. We did that religiously for 2

months straight and it did not improve. At his 4 month well baby check up the

pediatrition said we needed to see a specialist in Denver. We went to Denver

Childrens Hospital thinking they would tell us we needed a helmet. We walked in

and the NP instantly said he had left coronal cranio and needed surgery ASAP. I

told her we had a CT done and it said he didn't have that. She said she didn't

care what it said, he had it. We were in shock! The surgeons came in and

confirmed it. I had the CT scan sent to the staff assistant immediately to

review. She set our surgery date for a full blown CVR surgery on 12/21. For over

a month I got completely prepared for this cranio surgery. Then 2 weeks ago I

started reviewing his CT scan images and was shocked that I did not see that he

had cranio as I've been researching what CT scans look like with his type of

cranio. I immediately started calling the doctors with little to no reply. I

begged them to look at his CT Scans and that I didn't think he had cranio. They

FINALLY looked at it and called me back confirming he did not have cranio and

they wouldn't be proforming any type of surgery to fix him. I was at a loss of

words. I've been on this emotional roller coaster of he has cranio, he doesn't,

he has cranio, he doesn't. When I talked to the surgeon and asked if it was

plagio he said well yes he has that but he's not sure why the front of his head

is so bulging out when the back of his head is fine. (He sleeps on his back

only) We had a second CT scan done on 12/3/10 and when you compare his 2 mo CT

with is 4 mo you can see his forehead is gotten worse.

>

> I'm just so frustrated and lost on how to fix my little boy. I really don't

see how a helmet will fix his head since it's not really lopsided, his forehead

just sticks out on one side and the other side is flat. His ears are also not

lined up correctly. When you look at his CT scan, his eye sockets are also much

different size. I almost want to have the surgery anyway to fix him. I don't

want him to grow up with a lopsided forehead and have him form a complex about

it and be teased. I myself have a larger forehead and I still have a very low

self esteem about it.

>

> I have a feeling today they will tell us he needs a forehead reconstruction

but I don't know when a good time for that would be. I just want him fixed. Has

anyone else had anything similar happen to them where their child was diagnosed

with cranio and turned out to be plagio? My family has lost all confidence in

these doctors obviously so now I don't know where to turn to or go.

>

> Lost, confused and frustrated mother, Summer.

> p.s. sorry to make this so long.

>

[Guest guest]

I'm so glad they found it. There is another group called cappskids that has a

lot of parents dealing with cranio. I think you should check there for stories

about stories about surgery. They also have a facebook group.

-christine

sydney, 5 yrs, starband grad

> >

> > Ok I'll try to keep this short. When my baby boy Brentley was born we

noticed his forhead was uneven. The nurses said it was from birth and would fix

itself. At his 2 month well baby check up the NP said he may have

Craniosynostosis. I went home and googled and couldn't sleep as some pictures I

found looked just like my son. I called the doctor the next day and voiced my

concerns and he ordered a CT Scan. We had the CT scan done at 2 months old and

it came back as he did NOT have cranio and that it was positional plagiocephaly.

They said to have him sleep on the bulging forehead side. We did that

religiously for 2 months straight and it did not improve. At his 4 month well

baby check up the pediatrition said we needed to see a specialist in Denver. We

went to Denver Childrens Hospital thinking they would tell us we needed a

helmet. We walked in and the NP instantly said he had left coronal cranio and

needed surgery ASAP. I told her we had a CT done and it said he didn't have

that. She said she didn't care what it said, he had it. We were in shock! The

surgeons came in and confirmed it. I had the CT scan sent to the staff assistant

immediately to review. She set our surgery date for a full blown CVR surgery on

12/21. For over a month I got completely prepared for this cranio surgery. Then

2 weeks ago I started reviewing his CT scan images and was shocked that I did

not see that he had cranio as I've been researching what CT scans look like with

his type of cranio. I immediately started calling the doctors with little to no

reply. I begged them to look at his CT Scans and that I didn't think he had

cranio. They FINALLY looked at it and called me back confirming he did not have

cranio and they wouldn't be proforming any type of surgery to fix him. I was at

a loss of words. I've been on this emotional roller coaster of he has cranio, he

doesn't, he has cranio, he doesn't. When I talked to the surgeon and asked if it

was plagio he said well yes he has that but he's not sure why the front of his

head is so bulging out when the back of his head is fine. (He sleeps on his back

only) We had a second CT scan done on 12/3/10 and when you compare his 2 mo CT

with is 4 mo you can see his forehead is gotten worse.

> >

> > I'm just so frustrated and lost on how to fix my little boy. I really don't

see how a helmet will fix his head since it's not really lopsided, his forehead

just sticks out on one side and the other side is flat. His ears are also not

lined up correctly. When you look at his CT scan, his eye sockets are also much

different size. I almost want to have the surgery anyway to fix him. I don't

want him to grow up with a lopsided forehead and have him form a complex about

it and be teased. I myself have a larger forehead and I still have a very low

self esteem about it.

> >

> > I have a feeling today they will tell us he needs a forehead reconstruction

but I don't know when a good time for that would be. I just want him fixed. Has

anyone else had anything similar happen to them where their child was diagnosed

with cranio and turned out to be plagio? My family has lost all confidence in

these doctors obviously so now I don't know where to turn to or go.

> >

> > Lost, confused and frustrated mother, Summer.

> > p.s. sorry to make this so long.

> >

>