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

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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.