PDA

View Full Version : Bicoronal?? Advice please!



hsimpson
03-10-2009, 04:10 AM
Hi there!

First off - this is a great site! It is wonderful to be able to come here and feel welcome to bounce my questions/concerns off of you guys! I've read many of the stories on here, and your little ones are absolutely adorable - and I'm floored by what doctors can do with this surgery. Absolutely amazing!

So, our sweet boy has ridges. From what I learned now, his ridges are on both his coronal sutures. This is our second son. Our first son had a few things going on (hip dysplasia that was corrected, a possible spinal problem that straightened out, as well as a possible genetic disorder (ehlers danlos) that is so far so good) God is Great! So, we've been through a bit before with the medical stuff and testing.

When our son was born, I remember looking over and seeing the nurses feel his "ridge" just moments after his birth. Everyone told us the sutures had overlapped due to pressure from contractions. I was having light contractions for 1wk before my scheduled c.. (we have big babies, 1st was 11lbs8oz, 2nd 9lbs15oz..)

So - we were told the sutures would smooth out and his soft spot would appear. Well, I think the ridge did go down a tiny bit a day after he was born. But - since then there has been no change. He also has a bit of a "dip" right where his forehead and the ridge meet. He's 3mo now and I'm concerned he may have bicoronal..

I've talked to his ped about this twice. We absolutely love her. She found our older son's hip dysplasia and I feel like I owe my life to her! The first time I mentioned my concerns she understood and said let's check him in 1 mo and then he may need a referral to a neuro for a catscan.

Well, life has taken a few turns since. I'm getting laid off, we're not 100% what the boys insurance will be - and I'm still concerned about his sweet little head. So, we went back to the ped to see if we could have a catscan now while we still have ins. This time, she said not to worry. She said the sutures are just overlapping and aren't fixed - and for me not to worry and to stay off the internet! Our previous experience with this medical group was that they tested when there was the slightest possibility of something - and when they told us to wait it out (like with our oldest boy's spine..) we did and they were right.

So - in my heart of hearts - I want to believe her and have complete faith and not worry. But, he's my little guy! I'm worried! Plus the stress of finding a job, insurance, changing medical groups, etc - it's a lot to deal with. At the end of this month we can no longer take the boys to our beloved group of Peds and docs!

So my question is this - have any of you heard of these ridges correcting themselves and going away on their own? Can ridges really stick around for 3+mo and then just go away?

I would really appreciate your replies! I posted some pics of our little sweetpea if you want to check them out.

Thanks so much!

hsimpson
03-10-2009, 04:12 AM
Oh yeah, the photos are under my profile, in an album called baby.

Abby'sMom
03-10-2009, 06:19 AM
Your son is beautiful! I'm sorry you have so much on your plate right now. It is very possible that his coronal sutures are just overlapped and will spread as his head grows. I saw the ridge you are talking about in his pictures but he didn't jump out at me as being brachycephalic. Of course I'm just another mom and it can be hard to tell in pictures. How is his head growing? Bicoronal babies tend to grow tall because their heads are restricted from growing front to back.

I don't think you need to push for a CT scan but I would suggest you push for a referral to a Neurosurgeon. A NS will be able to tell you what if anything is going on by just feeling his head. I would just say with all due respect you would like the opinion of a specialist on this before you lose your insurance. It sounds like an understanding practice. I hope you are not dealing with cranio but you've found the right place for support if it turns out that you are. :hugg

Jenny
03-10-2009, 08:27 AM
Welcome! I'm a bicoronal momma with a bicoronal daughter. Nice to meet you!

Your son is adorable! I don't see anything resembing bicoronal synostosis in my opinion. Those are the coronal sutures you are seeing, and it looks like they are just overlapping. Both my babies without synostosis had these and they do resolve on their own. My son is almost 6 months now. You can still see them a tiny bit, but they have for the most part resolved. My second daughter had ths also, but i cant remember when they were no longer visible.

If you are still concerned though, which as a mommy of 3, i know how hard it is to not be concerned, i would suggest seeing a nuerosurgeon. I don't think there is any need for a CT. I hope this helps!

Katie
03-10-2009, 09:53 AM
Welcome! I always tell parents to go with their gut. If not a CT, then push for a visit with an NS. He is adorable! I can clearly see the ridges, but I don't see any of the typical forehead "bossing" that many bicoronal babies have. I hope you're able to get in to see a NS, and that it does prove just to be overlapping :hugg

AuburnLocks
03-10-2009, 01:00 PM
aww...what a cutie. congratulations! I have no experience personally with coronal but he looks perfect to me. It's normal to be able to see and even feel the sutures at that age. I think that's what you're seeing withe the line and the dip. Here's a picture of my son around the same age. You can see his coronal suture clearly (no cranio in his case)
http://farm4.static.flickr.com/3370/3343898871_a57bf945d7_o.jpg

Your son's head shape looks great and it sounds like you trust your pediatrician and that they have been responsive to your concerns in the past which is a good sign. Would they maybe see you monthy for a while until you feel better about it?

But you should ask for a referral if you are really worried. You're mama and mama knows best! I would personally not ask for a CT scan without first speaking to a neurosurgeon since his head shape is normal.

Good luck with everything. Enjoy him! He's adorable.

Wyatt's Mom
03-10-2009, 03:32 PM
Hmm, I took a look at his pictures, he is gorgeous!

I don't think you need to push for a CT yet but i do think you should see a neurosurgeon. Pictures are hard to tell sometimes but in the one with him on the brown blanket and the black stripes (kinda) his left eye looks a little "winky" meaning it doesn't open as much as the right? Is this just a odd picture or is that true sometimes?

Anyway, like the others have said, his coronal sutures could just be overlapping. My nephew's were like that and he is fine and has a normal shaped head now.

Good luck and let us know what you find out!

Lisa
03-10-2009, 03:48 PM
It is so hard to give opinions based on pictures, he is a cutie though! If you are the least bit concerned, I would get a referral to see a craniofacial surgeon before your insurance runs out.

charliesmummy
03-10-2009, 06:05 PM
Your little man is adorable! I to also see the ridges your talking about but his head shape looks good to me. My non-cranio baby had a very prominent ridge on the right side of his head which stayed until about 6 months old but now at 7 months it's completely gone. I would however still go with your gut feeling as it's very hard to tell in pictures. Your doing a great job x

sophie'smom
03-10-2009, 06:51 PM
Hi Mom! he is so cute :-) my baby is bi coronal and your baby doesn't seem to have any of the typical features (taller head and wider forehead), but I am not a doc. I agree with what some of the moms have said ... before your insurance expires, do what you need to do. We have to be so proactive for our little ones! please holler if you need anything else.

*jules*
03-10-2009, 08:24 PM
Hi, I dont have any experience with coronal or ridges (except my son's metopic ridge) so I'm not much help with your question. I just wanted to welcome you and let you know that this is such a wonderful site. I also agree with other mommies, seek an opinion of someone who specializes in cranio if you can, even if only to ease your mind. Good luck, I'll keep you and your little guy in my prayers. Keep us updated, I love to know what's going on with all the babies in this cranio family!

hsimpson
03-12-2009, 02:33 AM
You guys are amazing! I can't tell you how relieved I feel to know that other kids had the ridges and that they went away. I really didn't know how common they were, and I know *all things are possible* but it's a huge relief to know that some of you have experienced this first hand.

I will ask for a referral. We're due to go back at the end of this month. We'll see! I still had an uneasy feeling after the last appt, but after finding this site and "talking" with some of you - I feel much better. Thank you!

I will keep you guys updated, and will certainly keep your little ones in my thoughts. This support network is so powerful, you're truly doing great work here. Keep it up!

Hannah