View Full Version : I'm new here, from Jacksonville, North Carolina
06-21-2007, 01:13 PM
Hi, this is my first time posting here. I was referred by people on babycenter.com to come here and find others who know about cranio. I just had my fourth child on May 17, 2007 and I have never heard of cranio before having him. Right after I had him I noticed his odd shaped head (long and narrow) the doctors and everything didn't even mention it (maybe because they were to worried that he might have something called testicular torsion) so I figured it was just from coming through the birth canal. We after about a week his head stayd the same shape and me and my husband noticed a bone that none of our other kids ever had that stuck out of the top of his head. I came online and searched what it could possibly be and cranio had popped up. I researched it as much as possible and although I haven't seen the actualy neurologist yet it seems like it is his sagittal suture that has closed. I mentioned it at his one month checkup last week and they also believe it could be cranio, so now we just have to wait until july 18th when we have to drive up to greenville to see the pediatric neurologist. I don't know absolutely anything about this condition, not even sure what type of cranio for sure, so if anyone is willing to help shed some light on it that would be nice. Maybe someone from my area who has been through it? I know the aspects of what it is and how they aren't exactly sure what causes it but I don't know anything else about it. So any help would be nice :) my email is email@example.com and I will also come on here and try to check the boards. Thanks :)
06-21-2007, 01:32 PM
:colorsI used to live in Jacksonville in 2004 when my DH was still in the Marine Corps, but now we are back home in Montana. Anywho, what you are describing sounds like Scaphocephaly (Saggital Synostosis) which is what my daughter was diagnosed with. My Ped noticed it at her 8-week check up (the ridge down the middle of her head) and sent her for a CT scan, and then we got a referral to the Children's Hospital in Denver to confirm. Kudos to you for being so proactive in researching and bringing it up with your Ped. I hope the NS in Greenville gives you some answers. Keep us posted, and welcome again! This place has helped me so much...I dont' know what I would do without it.
06-21-2007, 02:30 PM
Welcome...Good luck with your appointments...you'll get a lot of great advice on this site.
06-21-2007, 06:06 PM
Welcome! Glad you found us. Way to be proactive! Good job mom! Are you seeing a nueroligist or a nuerosurgeon? They are two different things (tons of different termanoligy you will start learning). I beleive you really need to be seeing a nuerosurgeon- If my understanding is correct, a nueroligist deals with the functions of the brain, where the nuerosurgeon (NS) deals with the shape/correction of the skull (along with tons of other things).
If your son does indeed have cranio, please try to remember that it is fixible. It is a scary time and putting your child through surgery is by no means easy, but they do really, really well. :hugg's Post away, we're here to help!
06-21-2007, 07:34 PM
Hi Katie! Welcome to the site! My son also was born with an elongated head shape. He was diagnosed with sagittal at 3 months old and had surgery at just over 4 months old. I would love to help in any way possible. Feel free to ask any questions that you have.
06-21-2007, 09:09 PM
I know he should be seeing a neurosurgeon and not a neurologist but the dr said neurologist, but they probably mean neurosurgeon. lol I have no idea. Do the neurosurgeons do the cat scans and x rays? he hasnt had any done yet, they just felt his head and was like we suspect cranio, and made me an appointment like 3 hours away at ECU (East Carolina University). I dont really know much of anything at the moment. I know what I believe it to be but other than that I am 100% clueless as to what is going on. lol. 1 thing I did wonder, I knew I read it can be passed down from the parents. Which neither of us had it, but what about others in the family? I know my 2nd or maybe it was 3rd cousin was born with sagittal. So maybe its in my family somewhere, I know thats how I ended up getting my Von Willebrands, my 2nd cousins all had it, my mom and dad dont have it. lol So I was just wondering if anyone had any idea if that could be a possibility or just by chance?
06-21-2007, 09:57 PM
It can be 'in the genes' but it can also be just a fluke. There aren't a lot of answers there yet.......
As for the neurosurgeon/neurologist and CT scans. I'd call to verify that the people you are seeing do handle children w/ cranio and if so, do they want you to get a CT first? I only say as I've heard of multiple people who were refered to the neurologist, waited forever for the appointment, go to the appointment only to be told that they need to be seeing a neurosurgeon. With the CT scans- we didn't have them until after our appointment, our NS just wanted them in hand for the surgery-she diagnosed w/o seeing them. As you are traveling 3 hours, I would call ahead and see if they want to schedule it for the same day you are there--just explain you are traveling a distance etc......
06-21-2007, 11:27 PM
I will most likely do that tomorrow, because yes I dont want to travel 3 hours for nothing. I would be extremely angry lol. I already have been traveling back and forth from here to there for his other surgery which is july 13 (a hernia) and to see the pediatric hematologist since our hospitals around here are pretty much worthless lol
06-21-2007, 11:30 PM
lets see if this works, this is my baby boy Deaglan Liam
06-22-2007, 12:06 AM
Soooo cute! Can you get a shot from the top of his head (just for our non-doctor opinions :giggle )
06-22-2007, 07:45 AM
he was sleeping, so i couldnt get a great picture, and didn't want to wake him up. lol
plus im taking them on my cell phone since i dont have batteries in my camera, so i dont have much to work with. when he wakes up ill try to get one of him sitting up in his carseat or something
06-22-2007, 11:48 AM
I :adore sleeping babies! I can see perfectly on that picture. I don't have a saggital baby, but I would say it does look alot like the pics of ones I've seen.
(Never wake a sleeping baby! I recall w/ my first how it wasn't a big deal, but by the time I got to my third- no way was I gonna wake her!)
06-22-2007, 01:40 PM
lol yea, hes my fourth so i had no intention to wake him up. Do you know if it seems to get worse over time? i swear his little bit of soft spot thats left is getting littler...lol maybe its just me....
06-22-2007, 04:50 PM
Your son is so cute. I am really glad you have found this site. It truely is wonderful. I hope you get some of the answers you need at your appointment.
Can't wait to get to know you more.
06-22-2007, 04:51 PM
aww thanks :) I hope I can get the information also. :)
06-22-2007, 10:47 PM
My daughter had coronal CS, and hers did get worse over time. I don't know about saggital though. Sorry. Those were great pictures. Good job mom!!
06-22-2007, 11:10 PM
:) thanks. I have decided im going to bother the heck out of the peds on monday to see what they can do about referring me to the right kind of dr....i dont want to drive 3 hours for nothing. unless they want to pay my gas lol.
06-27-2007, 05:30 PM
Welcome to the site. :welcome
My son had saggital and the soft spot did slowly get smaller, it was hard at the time to see that his head shape got worse over time but now when I look back at the pictures it was obvious to see that it had, especially his forehead.
If you want you could take pictures from the top (birdseye view) and the side every month or so whilst you are waiting for appointments, scans etc and then you have something to compare to. When you see them everyday it is hard to notice the changes. I found this helps me post-op aswell.
All the best with your appointment, keep us posted
06-27-2007, 07:18 PM
He is adorable! His head shape looks similar to my son's head shape before his sugery. I don't really know if the soft spot gets smaller because Zachary didn't have a soft spot at all when he was born.
06-29-2007, 10:55 AM
Welcome to Cranio Kids Katie! I was also going to ask about the neurologist vs. neurosurgeon, but I see Jennifer already covered that :adore What a beautiful baby you have! from your description and the pics, he does remind me of the saggital babies we've had here. Good luck with your appointments, let us know how it goes :hugg
07-07-2007, 05:25 PM
i havent heard from my sons dr about changing it yet, they still havent "approved" giving me the right to choose, if i dont hear by the 18th then im going to waste my time and money that i dont have to see the neurologist.
07-08-2007, 10:59 AM
I hope they give you the answers you are looking for! Keep us posted!
07-15-2007, 12:17 AM
so far, the doctor never got back to me so since my neurologist appt is Wednesday I guess I will just go to it. Atleast then he will refer me to a neurosurgeon (I still am angry about the wasted trip though) but I talked to my sons surgeon yesterday (He had his double hernia surgery yesterday up there) and told him about it and he said yea he should see a neurosurgeon but atleast the neurologist will check for brain damage n get that out of the way so he said its not a completely wasted trip. So I was just like oh well got to take what I can get I guess.
07-18-2007, 10:09 AM
I hope that something comes out of your trip today. I know how hard it can be to wait for answers. Let us know.
07-18-2007, 09:07 PM
I am still no further than I was before I went today. I got there and they said the neurologist had called in sick, so was giong to reschedule me and i said i just drove so far :( so they let me see another neurologist. She asked why I was referred there for suspected cranio (i knew it!) lol then i explained to her how i tried getting the doctor numerous times to change it to a neurosurgeon but they wouldnt listen. The only thing she said she could do was a cat scan. So she did one and she sent me home the copies (not a 3d one just a traditional one) she said it looks like the suture is open yet the ridge is on top of the suture kinda like its overlapping..then went on to tell me she has no idea if its closed or not. So she referred me to a neurosurgeon (just like i figured...damn ped..lol) but she referred me to one at Duke Health systems which she said is the only one she would even think about taking her own children to. It is even further away from me than greenville was but she said its worth it and that the neurosurgeon there will know if he has it or not because she dont know whats going on...all she knows is that his brain isnt squashed lol. Atleast she was honest. So I wont know until my appt with the NS which I should get a call tomorrow telling me when it was....has anyone ever heard of a suture not being closed but the bones overlapping? lol like i said she said she really cant tell for sure if its closed or not but it looks like the bones are overlapping.
07-19-2007, 04:43 PM
Hey girlie. Well we all knew that was going to happen now didn't we. LOL. I'm glad you got the scans done though. I have heard of the bones overlapping, as a matter of fact, when my ped first noticed the ridge, that is what she suggested, and told us to keep an eye on it and if it wasn't gone by the next appt we'd go from there... well it wasn't and low and behold it was fused alright. I hope that Deaglan's are just overlapping, from what I heard from my ped, sometimes that just works itself out...but we never got into details because K's ridge never went away. Anywho, I'm glad they are sending you up to Duke. I know it's further away but I think Deaglan will be in the best of hands up there. Good luck, and keep us posted!!
07-19-2007, 06:55 PM
It sounds like you are finally getting sent in the right direction. Woo hoo! As for overlapping bones, it is pretty normal. The bones in the skull are floating so that the skull can move around for the baby to come out. Our friends' baby had all his bones overlapping so that you could see ridges along every suture line. They do have to monitor to make sure that it goes back within a couple of months. (His went back in the first 3 months or so.) If the bones are just overlapped, then the sutures will still be palpable. With cranio, the sutures are not palpable.
07-23-2007, 01:24 PM
Yeah, I wouldn't mind if it ended being something that will go away on its own. He don't really need to go through any more surgeries. :) But thanks everyone for helping me with everything and I still haven't found out when the neurosurgeon appt is but I will be sure to let everyone know! I did see that someone else here from NC had to see the same dr..i believe the name is dr. fuchs so it makes me feel good that I am actually seeing someone worth seeing :)
Just been listening so far, wanted to say ... hang in there with the waiting, that's tough! Your kids are just so cute.
07-24-2007, 10:18 PM
I found out my appt with Dr. Fuchs up at duke is on August 30th at 11. so it is just a matter of waiting to see what we find out :)
07-25-2007, 09:13 AM
I'm glad you got that app't. I'll be thinking of you. BTW I love your myspace page. Such cute pics :)
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