My grandson is 4 mos old w/flat head

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He also has something wrong with his spine and was having problems opening his fists. I can't remember the name of it. Seemed like the name had a "c" in it.

Charlene A. Willoughby

E-mail: adanaturkey8385@...

Phone: 509-599-9966

From: christineashok <christineashok@...>Plagiocephaly Sent: Wed, December 15, 2010 7:15:22 PMSubject: Re: Need Help! Diagnosed with Cranio on and off and now confirmed it's Plagio.

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.-christinesydney, 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.> >>