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eeyore81
09-12-2008, 06:10 PM
Hi all. I'm new to all of this and can honestly say that I have never heard of craniosynostosis until a few weeks ago.
Jonathan was born a healthy little guy on June 20, 2008 (3 1/2 weeks early by induction). At his 2 month appointment his pediatrician noticed that his AF was a little smaller then it should be, and that he wanted to keep an eye on it. Just this past Monday (Sept 8) we took Jonathan back to his pedi for a check up due to a cold that we've been so generously passing around our home. While his pedi was checking his lungs I saw his hand move up to his head. He remained there for a while but didn't say anything. I asked him if his AF seemed smaller and he said he wanted to finish checking his lungs and then he had to tell me something. I instantly became scared and knew what he was going to say. After he told me that Jonathan just has a virus that he will have to fight off on his own he told me that he wanted Jonathan to go for a skull xray at Sick Kids (Toronto). He explained that he thought his skull was fusing too early. I asked him what that would mean and all he said was "Operation". I instantly became numb and looked like a deer lost in head lights. I had done some research after the 2 month visit and had all of these thoughts going through my head. We have to wait until Sept 22 for the xray (it was their next available) and it seems so far away.
When we got home from the appt I posted on my birth club on babycenter and one of the ladies over their sent my post to Amy (amyly2n) over here and..here I am. The past few days have been a rollercoaster of emotions. I've been going from feeling so hopeful to feeling horrible and crying myself to sleep. I mentioned to Amy that to look at Jonathan you wouldn't think anything was going on and I sent her some pictures and she agreed. I've been seeing some of the pictures that you all have posted and I can see some similarities. He seems to be getting ridges on the sides of his head. To just sit here and wait is driving me crazy. I wish we could do this xray now and figure out what's going on. I have pictures to post and am going to take some new one's. Jonathan is still sick so I'm waiting for him to get better before I bother him with the camera. I will post as soon as I can, and will update as we find things out.

three.little.boys
09-12-2008, 06:22 PM
Welcome to CK!!! We are glad to have you here...but sad that you have to go through this journey. What kind of cranio do they think your son has? My son was born with a completely closed AF and a closed metopic suture. I remember that sinking feeling I got when I realized that major surgery was coming. If surgery is in your future, you have some major things in your favor....

First, I have heard that Sick Kids is WONDERFUL...several mom's on here used this hospital and have had nothing but great things to say (I'm sure they will chime in here soon)

Second, we are all here for you to help you through! You are not alone! Yse us for a support system. We all know how you feel and have been in your very same shoes. Your mom/sister/best friend can mean well, but they truly don't understand what you are going through...well, we do! We are here for you!!!

Third, Jonathan will come throught the surgery with flying colors. They ALWAYS do and he will not remember it one bit! That is the beauty of them being so young!

Fourth, you already have a great doctor on your side. Most of our childrens doctors did not even notice the cranio...we had to demand CT scans to confirm our oworst fears.

And, BTW, don't bother with the X-Rays. They often miss fused sutures. Youi need to get a 3D CT Scan.
Can't wait to see some pics of your little guy and daughter too!!

Welcome!!

Wyatt's Mom
09-12-2008, 06:39 PM
Welcome to craniokids. I'm sorry you have to be here but I know Jonathan will do great. I can't wait to see pictures of him!

I know of a few people who have used sick kids hospital. It's great. I believe the doctor you want is Dr. Philips. Janet (fiona'sMom) is a great person to talk to as she used that hospital and doctor for her daughter.

I agree though, an x-ray doesn't really show much. You either need a neurosurgeon who diagnoses without a ct or you need to get a 3d ct scan done.

Good luck. We'll all be here for you!

Amyly2n
09-12-2008, 07:14 PM
Hi! Glad you made it over here! So glad you found your way here! And again so glad Lisa saw your post and gave you my email!

dannlark
09-12-2008, 07:53 PM
Welcome to CK!!!! How awesome that you got pointed over to us, thank God!!! We're her for you, ask any questions that you have, nothing is stupid here... I too agree with the X-ray not being necessary. Go for the CT or see a NS or better yet a CFS (craniofacial surgeon). I remember well the sinking feeling in the pit of my stomach when Ian's ped. agreed with me that there was something going on with his forehead, and that, "I might need to be fixed..." ACK!! A million thoughts run through your brain in a split second... But if it is surgery that you're facing, they do so well, it's amazing!! Ian's 2 weeks 2 days out and he's FAB!!!!

Stay strong Mommy and I can't wait to see some pics of your little one...we LOVE head picking around here...I bet you're going to join our headpicker club too now... ;P