Re: I am glad to find this support group

[Guest guest]

Ginny, welcome to the group. We are all here to offer our current or past experiences. Where are you located and what facility are you receiving your helmet from. I went to Cranial Technologies the pioneers of the DOC band. I am sure with starting treatment early as you are planning to do, you will see fast correction. My son was banded from 4 to 6 months and received excellect correction of his plagio. He also had tort and was in pt but that has since resolved as well. We banded my son on 10/31 and he graduated on 12/31. He did so wonderful going from 15mm off to around 3 mm off.

Your baby has proven to be a real fighter.( My son was also in the hospital for a time after his birth). l am sure she will learn to take this in stride as well. Often the kids adjust just fine it is us as the parents that do most of the crying and overall worrying. Stay positive and I am sure like me, when your daughter turns 1 as my son did last week, you will so glad and happy and see how it is all so very worth all the time and effort. Let us know what helmet provider you are looking into and the state you live in. Others may be able to sear you to a great provider and orthotist (the person who does the fittings) in your area. Dont just chose one on your own. There have been some parents who have been unhappy with their orthos and facilities and had to start all over after months in ill fitted helmets.

We are here for you and email me or any of us at any time. Tammy Mother to . Long Island NY

From: gallen1029 <gallen1029@...>Subject: I am glad to find this support groupPlagiocephaly Date: Sunday, June 29, 2008, 3:21 PM

My daughter is 5 months old. She was very sick and in our childrens hospital the first month of her life. She has plagiocephaly and tort. She has an appointment this week to get a helmet. My husband and parents both feel strongly about the helmet. I am very nervouse for her and stressing about it. She has been through so much in so little time and it is just hard to see your little one having to deal with so much. I know it will be for the best in the long run. I would love the talk and support. Thank you!Ginny

[Guest guest]

Tammy, it is nice to hear from you. We live in Cincinnati Ohio. was taken to Cincinnati Childrens hospital 13 hours into life. Our appointment is with the plastic surgery center for cranial correction at Childrens. We were so pleased with the doctors in the NICU there and feel that hopefully they will be just as wonderful in this department. She was a fighter. She is known as our little "Rocky". It is so true that we are the ones that go through the crying and worrying. I look at her every day and have to hold back the "happy" tears. I am looking forward to sharing this journey with all of you. It makes it so much easier to have others to talk to that have gone through or are going through the same things. Thanks for your response.

Ginny

From: gallen1029 <gallen1029 (DOT) com>Subject: I am glad to find this support groupPlagiocephalyDate: Sunday, June 29, 2008, 3:21 PM

My daughter is 5 months old. She was very sick and in our childrens hospital the first month of her life. She has plagiocephaly and tort. She has an appointment this week to get a helmet. My husband and parents both feel strongly about the helmet. I am very nervouse for her and stressing about it. She has been through so much in so little time and it is just hard to see your little one having to deal with so much. I know it will be for the best in the long run. I would love the talk and support. Thank you!Ginny

[Guest guest]

Hi Ginny!

It sounds like your little one has been through a lot, but I'm glad that she is

now doing better.

I just wanted to send a virtual " hello " from Cincinnati!

I'm an old timer, and lurk from time to time -- my son was in a DOCband in 2000.

He had a very long, narrow headshape (called

scaphocephalic or sometimes dolichocephalic) -- his head jutted straight back,

there was no " slope " at all. At the time,

Cranial Technologies was the only company that could help us with non-invasive

action such as a band or helmet. We dealt with

the pediatric neurology dept. at Cincinnati Children's in order to get our

prescription for the band (we had to have CT scans,

etc. from the to rule out fused sutures). He was pretty anti-band (but filled

out the script). He is no longer with

Cincinnati Children's. I've heard that the plastic surgery docs there are more

accepting of banding/helmet treatment.

We traveled to Chicago every other week for 4 and 1/2 months (including the

casting visit). At the time there were no Cranial

Tech companies in Ohio. I've heard good things about the other local companies

in Cincinnati, though.

We now go to Cincinnati Children's for OT/PT in the pediatric rhuematology

department, (son was dx'd with a connctive tissue

disorder about a year and 1/2 ago, which ultimately contributed to his odd

headshape in utero (he was also breech and

large)). Everyone there has been so great. So I think you should still be in

very good hands in any other departments you

need to be in.

Good luck with everything!

mom to Quinn, born 11/99, DOCband grad 10/00 -

-- I am glad to find this support group

Plagiocephaly

Date: Sunday, June 29, 2008, 3:21 PM

My daughter is 5 months old. She was very sick and in our

childrens hospital the first month of her life. She has plagiocephaly

and tort. She has an appointment this week to get a helmet. My

husband and parents both feel strongly about the helmet. I am very

nervouse for her and stressing about it. She has been through so much

in so little time and it is just hard to see your little one having to

deal with so much. I know it will be for the best in the long run. I

would love the talk and support. Thank you!

Ginny