Re: A new Scaphocephaly member!

[Guest guest]

Hi !I'm glad that you are on your way -- it certaily can be a frustrating and emotionally draining process. Instead of velcro, will your band open on both sides, with little metal pins going into holes? A rubber band on each side offers the resistance? That's the band my son used in 2000 for his scaphocephalic shape (breech, large (8lbs, 14.5 oz). He ended up being a c-section. The design might have changed, as it was quite a while ago, but CT does make a band specific for long/narrow headshape (otherwise know as scaphocephalic or dolichocephalic)CT is wonderful, and I'm sure you will get the results you want.You probably have run into posts from me if you've been doing arcive searches, as I've been posting a little more this year. But, here is a link with a brief bio of my son's experience, and a few pix of beginning and ending results. His case was pretty severe (he

was a "three" on CT's severity scale in all areas). and the CAPPS (craniosynostosis and positional plagiocephaly support) group had some stories on kids with plagio, and it's been there. http://www.cappskids.org/CAPPSPlagioKidQuinn.htmHe's eight now, and is doing fine.Take care and good luck!mom to Quinn, born 11/99, DOC grad 10/00 >------- Original Message ------->From : roccocooks[mailto:roccocooks@...]>Sent : 5/6/2008 11:35:11 PM>To : Plagiocephaly >Cc : >Subject : RE: A new Scaphocephaly member!>>Hi all, I've been peeking in for a couple of weeks and finally stepped up to join you. I have a almost 5 month - adjusted to 4 month old daughter with scaphocephaly, she was breech and a premie. We h

ad the 3d cat scan to rule out the sutchers being fused all good there. She was casted on Monday at CT - Paramus, NJ. She - did fantastic. We go back on the 15th for the band.Needless to say, I am very excited something is finally happening to "resolve" this. We haven't had the best experience getting here, alot of ring around the rosie with CHOP, mostly with them not hearing us. What I'm confused about, first not knowing how to read the board, cronilogically and the sort, second, I had opened a message and it ended up being about the scapho shape. I knew it was uncommon, what I didn't realize is there is a "special" band. I can't find the "Regan" picture in the July 2008 calendar on CT.So, now that I've rambled on, I'll close for now. I am so glad I've found this group, I'm positive I'll be here often;) getting DOC band 5/15/08 - a very special date, it was my Grandmothers birthday and it will be my 10th year anniversary for quitting smoking, things happen for a reason!!!!!!!!!!!------------------------------------For more plagio info

[Guest guest]

,

Thanks for the link - what a great improvement! I can't wait to see

my s head when this is all over;) That's a great idea with the

small boppy, I never thought of that. She's gotten pretty srong in the

neck area to be able to look straight ahead. What she does have is a

bad rash in her chin and neck area, I'm assuming because they touch

most of the time.

[Guest guest]

My daughter was a little chub when she was small and when she drank

milk it would get in the creases under her neck. If we didn't clean it

well the skin got really irritated.

-christine

sydney 2 yrs starband grad

>

> ,

> Thanks for the link - what a great improvement! I can't wait to see

> my s head when this is all over;) That's a great idea with the

> small boppy, I never thought of that. She's gotten pretty srong in the

> neck area to be able to look straight ahead. What she does have is a

> bad rash in her chin and neck area, I'm assuming because they touch

> most of the time.

>

>

[Guest guest]

Hi :The mini-boppy (or a towel) behind his nexk was our way, before he gained neck muscle strength, to "reposition" -- though no doctor ever gave us this information, we were just trying to give him time on the back of his head, and wanted to keep him off his sides. When he got older his chin did the same -- both when laying, as well as when sitting upright. He could look up -- but his tendency was to keep that chin down. I even pointed out in our appeals letter this tendency, and in one of the articles I used in our appeals packet, there was the same tendency in one of the pictures of a client. But in the "after" picture of the client, this tendency was gone. That was our experience too. While age does play a part in this, I think the remolding did help this out, too.Take care.>------- Original Message ------->From : roccocooks[mailto:rocco

cooks@...]>Sent : 5/7/2008 2:53:12 PM>To : Plagiocephaly >Cc : >Subject : RE: Re: A new Scaphocephaly member!>>,Thanks for the link - what a great improvement! I can't wait to see my s head when this is all over;) That's a great idea with the small boppy, I never thought of that. She's gotten pretty srong in the neck area to be able to look straight ahead. What she does have is a bad rash in her chin and neck area, I'm assuming because they touch most of the time.------------------------------------For more plagio info