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

[Guest guest]

I don't have similar experiences, but I wish you all the best and I believe that everything will be fine at the end. I'm sure there's a way to fix the problem, and you should be confident about it since your boy is so young now. No matter what the problem is, you have plenty of time to fix it. So cheer up, be a strong mother, seek help, maybe go see an expert doctor at other cities or states.

Plagiocephaly From: summerelysiaryan@...Date: Tue, 14 Dec 2010 17:29:42 +0000Subject: Need Help! Diagnosed with Cranio on and off and now confirmed it's Plagio.

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]

Wow, you have been through an emotional roller coaster. Shame on your

neurosurgeon for not looking at the scan. I am absolutely shocked that they

would schedule a surgery without carefully reviewing the scan first. I brought

my son to a neurosurgeon, and he wasn't sure by looking at him whether it was

cranio or plagio, so he carefully reviewed his scan and ruled out cranio. He

gave my a prescription and sent us on our way. That's what should have happened

in your case. I'm really sorry that you had to go through all that additional

stress.

I do think, even though your baby doesn't have as noticeable a flat spot as you

might expect, that a helmet will still help. My reasoning is based on how the

helmet works. It holds firm against any prominent spots (the forehead in this

case) so skull growth is redirected to the other areas of the skull. This

reduces the appearance of any bulging areas and rounds out the skull. In my

son's case, I didn't notice any flatness in the back until they pointed it out

to me at the helmet appointment. He actually had an unusual plagio shape because

his head was pinched in the back. He had flat spots on both sides of the back of

his head. I'm guessing this atypical plagio shape, along with a prominent ridge

he had on his coronal suture, is what confused the neurosurgeon we saw at first.

Interestingly enough, our son's squinty eye also had a (slightly) smaller socket

on the scan. I wonder if plagio can cause that? Just speculation... The helmet

did improve his eye. I'd say it started about 60% open and is now 80% open. I'm

sure he could get cosmetic surgery as an adult, but I hope he'll be confident

and well asjusted and won't let it bother him too much. Unfortunately, worrying

about how it will affect him bother ME a lot!

Hang in there! You have a lot of opportunity for improvement starting treatment

while your baby is so young. Make sure you get your baby checked for

torticollis. Good luck!

>

>

> I don't have similar experiences, but I wish you all the best and I believe

that everything will be fine at the end. I'm sure there's a way to fix the

problem, and you should be confident about it since your boy is so young now. No

matter what the problem is, you have plenty of time to fix it. So cheer up, be a

strong mother, seek help, maybe go see an expert doctor at other cities or

states.

>

>

>

> Plagiocephaly

> From: summerelysiaryan@...

> Date: Tue, 14 Dec 2010 17:29:42 +0000

> Subject: Need Help! Diagnosed with Cranio on and off and now

confirmed it's Plagio.

>

>

>

>

>

>

> 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.

>