Re: possible bad news re:Emilie

January 25, 2002

Sorry for the possible bad news. How scary. My fingers are crossed

that the 1st reading is correct & it is in fact not cranio. Xrays

can be hard to read for cranio, so it's best to have a CTscan done.

Best of luck. Be sure you let us know ASAP.

Debbie Abby's mom DOCgrad

MI

> Well, I just posted a few days ago that Emilie's xrays came back

fine.

> We knew that it was just the preliminary report (the pediatric

> radiologist was on vacation, so a regular radiologist read the films

> first), but we thought we could rely on it. So here is the update:

> the pediatric radiologist says that one of her sutures may be

> partially closed. He needs a cat scan to be sure one way or the

> other. So, we go for a cat scan tomorrow morning. How the heck am

I

> supposed to keep a 5 month old still for a cat scan?? They didn't

> want to give her any meds to sedate her, so we are bringing her in

> hungry so that she can have the bottle during the scan!

>

> Well, after hearing all of this, I decided that we are going to

have a

> second person read the xray and the cat scan. I am demanding that a

> pediatric NEURO radiologist from Children's Hospital in Los Angeles

> (one of the best hospitals in the country) look at them just to be

> sure. No one is going to deny me this!! My thought is that a second

> opinion can't hurt in this situation, even if the first guy thinks

> that her sutures are fine based on the cat scan films.

>

> My gut instinct tells me that she doesn't have cranio -- so pray

that

> I am right on this one.

>

> Any heard of a partially closed suture (on only one side)??

>

> thanks for reading this far!!

January 26, 2002

First let me say that I believe you are on the right track with

getting the CT scan done. X-rays arent real reliable as far as

cranio goes. Also you are doing well on getting a second opinion.

Partial closure of a suture is craniosynostosis. The only way to

correct is surgery...those are the cold hard facts: if a suture is

partially closed banding won't help and if surgery is done depends on

the suture involved and how severe the nuero considers it. I have

had friends that had children with sutures partially closed that got

surgery and others that the nuero said it wasn't severe enough to

require surgery. Im not going to load you down with all the facts of

cranio until you know more. I hope the CT scans went well(they

sedated my daughter for her CT). I hope no cranio is found but if it

is and you need to talk feel free to email me @ MMALFAM@....

Good luck and lots of prayers that the suture is indeed found open.

Hugs,

Mommy of Austen 12/21/96 and *Leigha 7/22/2000

* bicoronal craniosynostosis dx 2/14/01 - Craniovault

reconstruction with Front orbit advance 5/01/01 - DOC band 5/25/01 -

9/24/01

http://www.geocities.com/leighasmygirl/Leigha-CS.html