Calling all mild metopic-no surgery mommies!!!.... [Archive]

Mindy

04-09-2009, 10:00 PM

Its been some time since we've all checked in so I thought we could post on how our kids are doing- both cosmetically and developmentally. I have to take some more pics of Shane and put them up here. I thought it would be nice to share some pics and any concerns since it has been quite a few months.

Shane is 21 months old, so we've been on this wait and see long road for 17 months and so far, developmentally, he is doing awesome! He is starting to use more words and is occasionally using 2 words like " Hi RiRi". RiRi is his big sister's nickname. He understands everything. I'm thrilled with how he is developing. Cosmetically, I'm not as thrilled. Granted, he looks great from straight on and from the side. Noone would really ever know that there was any concers. But, when I look at him from above, I feel like I'm looking at a little triangle-head or egg-head. I know that not all heads are round, but a part of me wonders if it just wasn't supposed to be this way..that if he didn't have his suture fuse so early, that his head would be more round. I may take him back to our CFS at CHOP or Dr. S in NY just for a follow-up, but for now, we're just waiting and watching and still hoping that it doesn't get worse.

Another thing that bothers me is that the ridge continues all the way up onto his head and stops I guess where the soft spot would have been, which is now closed. I can't feel a sagittal suture at all, although I can clearly feel the coronals nice and open. Do any of you feel the sagittal suture?

I'll post pics in a few days. All in all, Shane is doing great! Its that mommy gut feeling that just hasn't gone away yet about the shape of his head.

Thanks for listening and I look forward to hearing about your little one's progress!!

dannlark

04-09-2009, 10:03 PM

Great idea Mindy!! Can you guys include pictures too? Maybe side by sides from when you first noticed it to now?? Very helpful thread!!

grayridge

04-10-2009, 01:02 AM

Mindy - I have the exact same concerns with Jimmy. The ridge is still very apparent, at least to me, and extends all the way up to where the soft spot should have been. I can feel where the sagittal suture is because it feels that it is slowing zipping closed ( I hope that makes sense). I have noticed more pinching in Jimmy but not enough that I am concerned, yet. I am still taking lots of photos for comparison but I still feel as though I may be the only who notices the slight changes that have been taking place in the past couple of months. Jimmy's head is quite egg shaped as well and not round at all. Developmentally he is still delayed in cognitive, speech, and fine motor areas, he is caught up with his gross motor skills though. I am still not convinced that his head has settled into the shape it will be and I am not at the least content that the cranio is a thing of the past. I have a niggling feeling that things may all progress to surgery in the future. I can't explain it but I am just not convinced that he will stay mildly metopic.

http://i252.photobucket.com/albums/hh14/grayridge/2009-03-21280-1.jpg

mckennasmum

04-10-2009, 01:47 AM

great idea Mindy! Well McKenna was diagnosed at 5mths and she will be 19 mths next week. We are actually very happy with the changes in her head shape and the improvements that have occurred. The ridge is still there but much less noticeable and for her I think the largeness of her eyes help to overshadow the ridge. There is still some mild temple pinching, but from the top her head shape is good. I must admit that we haven't taken any specific head photos in about 6 mths because it hasn't been concerning us. She is developing great motorwise and speech, etc. Using 2 word sentences and her vocabularly is expanding. She understands 2 part sentences and responds, such as go to your room and get your shoes and bring them to mummy. We are going back to see the craniofacial team in Sept as a followup more for peace of mind than anything else. Will she need the ridge shaved down in the future, possibly, but for now we are accepting of what she has!

Anyway here is a photo of her a year ago and a couple of recent ones!

http://i262.photobucket.com/albums/ii119/scsmith/McKenna%20Mar%2008/Feb08056-1.jpg

http://i262.photobucket.com/albums/ii119/scsmith/McKenna%20Mar%2008/Mar08053.jpg

http://i262.photobucket.com/albums/ii119/scsmith/Mar09036.jpg

http://i262.photobucket.com/albums/ii119/scsmith/Mar09041.jpg

http://i262.photobucket.com/albums/ii119/scsmith/Mar09043.jpg

sorry the first couple are so small, I can't seem to change them, but I think the others give you an idea. I must admit as most of us know, whether your child has surgery or not, it can be a long, scary, emotional time and we are here now a year later happy with our and the CFS decisions and we'll see what the future holds!

mckennasmum

04-10-2009, 01:49 AM

Mindy - I have the exact same concerns with Jimmy. The ridge is still very apparent, at least to me, and extends all the way up to where the soft spot should have been. I can feel where the sagittal suture is because it feels that it is slowing zipping closed ( I hope that makes sense). I have noticed more pinching in Jimmy but not enough that I am concerned, yet. I am still taking lots of photos for comparison but I still feel as though I may be the only who notices the slight changes that have been taking place in the past couple of months. Jimmy's head is quite egg shaped as well and not round at all. Developmentally he is still delayed in cognitive, speech, and fine motor areas, he is caught up with his gross motor skills though. I am still not convinced that his head has settled into the shape it will be and I am not at the least content that the cranio is a thing of the past. I have a niggling feeling that things may all progress to surgery in the future. I can't explain it but I am just not convinced that he will stay mildly metopic.

great photo Darcy, although in that one his ridge looks really mild, have you got some recent ones from the top you could post so we could see?

dannlark

04-10-2009, 01:55 AM

Susan, she looks FAB!!!! Where is that prominent ridge that was a so obvious when she was younger?!?!?! She really has grown into her head and the forehead looks sooo smooth!! I agree, those BIG eyes are going to stop traffic! What a beauty!!! Waiting and seeing was by FAR, in hindsight, the right choice for you! Job well done, Mommy!!

Mindy

04-10-2009, 04:55 PM

Darcy,

I know what you mean about the suture zipping-up, but just so you know, I have been doing more research and found an article which describes the normal closure of sutures. It mentions that it is normal for the metopic to zip up and close. But, for the sagittal, I don't think it is supposed to close until the 2nd decade of life, so if it is actually closing on Shane and Jimmy, I'm going to be concerned. Maybe we're just feeling the top of the metopic? ITs just strange that I can't actually feel the sagittal suture at all when I can clearly feel the coronals. Do you have any pics of Jimmy from the top down? I am going to take some of Shane later when he's in the tub and post them. I'll try and put them side by side to compare as Larkin said, but I'm not real good at that. Maybe she can fix them for me.

Susan,
OMG! What a major improvement in McKenna since we first saw her! Her head still seems nice and round and her ridge is MUCH less prominent. Do you have any top down pics of her that we can see?

Thanks! I hope some of the other mommies join us.....Sharla, Amy, Leigh, and where is Alice's mom?? Did I forget anyone?

charliesmummy

04-10-2009, 05:29 PM

Wow Susan what an amazing difference a year makes. It just goes to show that the wait & see is sometimes the best option & that a ridge does not mean a child needs surgery.

I am trying to get some photo's of my friends son who had an extreamly prominent Metopic ridge, so much so that i think if any of you would have seen him you would have said he needed surgery. Anyway, he is now 5 years old & the ridge is almost gone & he looks fab.

Darcy ~ i think Jimmy looks great in that photo, i cant even see a ridge at all

Shar

04-10-2009, 06:23 PM

What a great idea!

So for H - she was born w/the ridge and no trigon. It has not progressed into trigon and now @ 16 mo. she is doing great developmentally. Her speech is good, just this week she learned "boooh-dee" (for bolonie - bologna). She sings, dances, and is still wanting to use the potty. She'll say, "Potty!" or "Diaper!" when she wants to use the potty or after she's already gone in her diaper. As for her head shape, she's got a long forehead from the bird's eye view (pic in my profile). She's kind of a longish-ovally squarish rectangle, lol! Her CFS and NS had her go for a CT scan a few months back to make sure her sagital was open since her forehead is bossy and she has a slight rear boss as well. The CT scan showed that all was open except the metopic. So, we go to see her drs about every 3 - to 6 months and they are doing an excellent job of keeping an eye on things. I'll get a pic up in a minute.

(@ 14 months)

http://www.craniokids.org/support/picture.php?albumid=413&pictureid=3636

I just added some more pics to my profile that show her head and ridge better and also ones of her getting a CT scan.

Shar

04-10-2009, 07:19 PM

Darcy and Susan, your kiddos look good! I agree with Susan that Jimmy looks mild, hopefully things will continue to improve for him and he won't need surgery. Doesn't the wait and see stink??? One minute it's all great and then you second guess. Susan, Mckenna looks AWESOME!!! Never would I think metopic seeing her recent photos! I mean, I can just barely see the ridge in the first photo and then not at all in the others :o) Mindy, you should get some bird's eyes up so we can have a gander at Shane, lol! Us crazy head pickers, ha ha! You know what I always say about my non-cranio kids' head shapes, tho, so hang in there. I seriously think my non-cranio kids are more triangular than H is. I am so not sure about feeling the sutures, tho. It seems that I don't know exactly how they should feel since I don't think I'd be able to feel them on my kids heads. I just never really felt for them before H was born, before the wonderful world of cranio was opened up to me. I am sure H's front soft spot is closed, haven't looked into when that typically happens. According to CT scan, sagital is open. Not seeing much pinching or widening in the back, but all my other non-kids all have various degrees of widening in the back, so not sure if I'd be too worried if H developed it to some point. Anywaaay...

Thanks for starting this thread!

Janet

04-10-2009, 08:54 PM

Can I just say that all the kids are gorgeous!! :adore

Mindy

04-10-2009, 09:04 PM

Jacqui,
I would love to see pics of your friend's son as a baby and now. That would be great to have on here to show moms of kids with metopic ridges that surgery isn't always required.

Sharla,
H looks great!!! She is so cute! I don't see any trigon. shape to her head at all and her ridge looks like it is softening up. I'm uploading lots of pics as I type this so I'll post them next. Its amazing how much his hair style, as well as, positioning can cause such a different appearance in the shape of his head. You'll see in a minute.....

Mindy

04-10-2009, 09:18 PM

Shane 6 months:
http://i5.photobucket.com/albums/y175/mdion/Shane6071-1.jpg http://i5.photobucket.com/albums/y175/mdion/Shane21003.jpg
Hair combed to side:
http://i5.photobucket.com/albums/y175/mdion/Shane21004.jpghttp://i5.photobucket.com/albums/y175/mdion/Shane21001.jpg

Hair combed straight down:
http://i5.photobucket.com/albums/y175/mdion/Shane21007.jpg http://i5.photobucket.com/albums/y175/mdion/Shane21005.jpg
http://i5.photobucket.com/albums/y175/mdion/Shane21010.jpg

Front view:
http://i5.photobucket.com/albums/y175/mdion/Shane21011.jpghttp://i5.photobucket.com/albums/y175/mdion/Shane21012.jpg

Trying to get the ridge to show up:
http://i5.photobucket.com/albums/y175/mdion/Shane21013.jpg
http://i5.photobucket.com/albums/y175/mdion/Shane21014.jpg http://i5.photobucket.com/albums/y175/mdion/Shane21015.jpg

6 months top view:
http://i5.photobucket.com/albums/y175/mdion/Shane6076-1.jpg
21 months:
http://i5.photobucket.com/albums/y175/mdion/Shane21008.jpghttp://i5.photobucket.com/albums/y175/mdion/Shane6079-1.jpg

Larkin- feel free to rearrange these so they are next to each other. I'm having a hard time!

Mindy

04-10-2009, 09:25 PM

Can I just say that all the kids are gorgeous!! :adore

Thanks Janet! I was thinking the same exact thing!

mckennasmum

04-10-2009, 10:52 PM

Mindy, in some of those photos his forehead looks great and in others you can see the slight pointed forehead, amazing how things can look so different! You can tell he's still on the mild side though. Its hard to know hey!

Thx for everyone's comments about McKenna, as I said we are really happy with her head and are almost I guess 'at peace, have accepted' the cranio thing, and especially the non surgical thing and are able to move on, but when you are right in the middle of the whole situation its so hard to see the light at the end. But we found a great surgical team and trust their opinion!

Will try and get a top down shot of her head and post it in the next little while. Getting her to sit still is a task in its self!

Mindy

04-13-2009, 03:03 PM

Susan,
I know..its weird how the hair and camera angle changes things. I'm waiting for some others to chime in to tell me what they think. Do you think he still looks mild?

Don't forget to post a top down shot of McKenna when you get a chance!

dannlark

04-13-2009, 03:11 PM

Mindy, he looks GREAT! IMHO... His brow is still nice and square and the ridge looks like it's softening. I bet in another couple of months it'll really start to blend in. Keep taking those pictures, but I think you made the right decision to wait and see. Congrats!!! And he's sooooooo CUTE and getting so BIG!

Mindy

04-13-2009, 03:33 PM

Thanks Larkin! It is always reassuring when you professional headpickers give your opinion. The narrowed forehead does bother me some, but I'm hoping his head will round out with time.

dannlark

04-13-2009, 03:41 PM

I think that his head shape is a "variation of normal" (don't you hate that saying?!?!?!). My kids all have that to some degree, although Shane's metopic fusing will make it a bit more narrow than the norm. But I love the fact that there isn't any brow pinching by his eyebrows!!! The line at the sides of his eyes is nice and strong. That's where I'd get worried, if you started to see any pinching there.

christyo

04-14-2009, 10:31 AM

Hi, there!

We have only recently started on our cranio journey, so no updates from us yet. It looks like my daughter Elena is on the "wait and see" list, too. Ugh! So nerve-wrecking. But my gosh, Susan, I hope that Elena's head will look as good as Mckenna's does! And Mindy, if I saw Shane walking down the street, I wouldn't even notice there was anything different about his head. (Of course, I'm only a novice head picker!) :)

Your kids are all gorgeous!

Mindy

04-14-2009, 08:06 PM

Thanks Christy! I'm sure you'll become a professional headpicker right along with us. Its inevitable! Keep taking those pics and post them on here anytime you need us to give you our opinion. I'm glad we can be here to support you. It helped me SO much when I first started Shane's craniojourney!

Shar

04-15-2009, 01:03 AM

Mindy, I haven't commented on your pics of Shane yet because I was waiting to have a look at them when I got on the big pc. But when I was on it yesterday, I forgot to look at them! So, I'll give you my opinion based on the smaller pics on the iPod. I think his head looks good and his ridge looks softer than the last pics of him I've seen. He is losing his baby look and looks older and more like your dh. I think his widening in the back would have happened even if his metopic didn't fuse "early", which in light of research he was just a tad early, right? So, I think all is good. If I were to really really head pick, I'd see that he has a tiny bit of an "indent" (for lack of better word) on each side above and a little in front of his ears. It is in his baby pic as well, so it could just be a normal thing for him. I know nothing about this, I haven't read anything about it or that it is something to be concerned with. He really does look great to me! And I am impressed with the teeth brushing, what a big boy!

Shar

04-15-2009, 01:04 AM

Sorry, I don't know how I got that mad little face on there, lol!

Mindy

04-15-2009, 09:59 AM

Sharla,
do you mean the temporal indentation? I too have noticed them and they were pretty evident in the baby pics. I think that just might be his head as my dh also has that. You can only see them in the front and side pics, right? As for the timing of closure, yes, we first noticed his ridge in pictures at about 6-8 weeks so that may be a tad early (even though some studies showed complete fusion in some kids by 3 months). When we had the xray done at 4 months, we took it to the CFS at CHOP and he said that the suture was still open but showing signs of closure. So, according to the xray (which may have not been accurate), it was still open despite the ridge. Who knows?

Shar

04-15-2009, 09:08 PM

Yes, that's what I meant, but seriously...only a total head picker would notice, and then I wouldn't think "cranio" because there are no sutures there, KWIM? Shane looks absolutely normal. Cute as a bug! And his ridge does look even more softer than it did at the end of last year. It really does! I think H's looks softer, but I see her every day so sometimes I wonder if I am really seeing that or not. Don't you wish you had the answers to all this cranio stuff?!? The worse for me is: when did H turn breech and for how long was she breech??? Is that what contributed to her metopic being fused??? I will NEVER know, ugh and lol at the same time!

Amy K

04-16-2009, 12:18 PM

You guys I just want to say that all your kids look so good and so normal and I don't think any of them will ever need surgery!! I know that's super easy for me to say though...when it's our own child I think we are sooooo picky about their heads. Camden's head has some funky shape issues going on, but besides his mommy and his surgeons, I don't think anyone else notices unless I point it out or have them feel his head! Hang in there, mommas...you guys are awesome!

Mindy

04-16-2009, 10:10 PM

Thanks Amy!!! :smooch

Amy K

04-17-2009, 12:25 AM

:smooch back atcha!

mckennasmum

04-17-2009, 03:07 AM

here's some shots of the top of McKenna's head that I promised (plus an extra I couldn't resist), getting her to hold still for a second is another thing though!!! Its hard to see with her hair but the ridge isn't that noticeable from the top anymore!

http://i262.photobucket.com/albums/ii119/scsmith/Apr09045.jpg

http://i262.photobucket.com/albums/ii119/scsmith/Apr09046.jpg

http://i262.photobucket.com/albums/ii119/scsmith/Apr09052.jpg

mckennasmum

04-17-2009, 03:16 AM

oh my cheeky McKenna one didn't post, oh well! here it is!

http://i262.photobucket.com/albums/ii119/scsmith/Apr09020.jpg

Mindy

04-17-2009, 09:46 AM

OMG Susan! McKenna is so adorable!! And her head is as round as can be!! She looks perfect!!

dannlark

04-17-2009, 12:13 PM

Susan, she is so cute!!! That last cheeky picture of her cracked me up...what a ham!! Her head shape looks FANTASTIC!!!! It has really rounded out! Way to go McKenna!!!!!

Shar

04-17-2009, 12:38 PM

What a beautiful cutie girl she is! :o)

momoftwo

04-17-2009, 02:04 PM

I agree Susan..McKenna is so freakin cute- LOVE the cheeky one! She looks wonderful!

I think that McKenna, Jimmy, Shane and H -ALL look great!! I am soo happy for you guys!

I promise to take head shots of Logan this weekend and them up with her update next week!

mckennasmum

04-18-2009, 06:19 AM

Amy, can't wait to see the photos of Logan!

Thx all I guess these photos show why our stress levels of McKenna's head have subsided so much, she's looking good, some days the ridge, which is definately still there, is more noticeable then others but by the time our follow up appt comes in Sept I think it will almost be a non issue. To be honest her whole non sleeping/scremaing, no weight gain problem overshadowed everything for the past 8 months or so and now that her dietary intolerances have been sorted, finally, we are so much calmer and have somewhat (to the best of our ability right now) accepted her head shape is her head shape and she's happy and healthy!

I agree that all the other kids head shapes are looking good and from the photos don't seem too much of a concern at all, gee they're all good looking kids though if I say so myself!

mshanson

04-20-2009, 08:44 PM

I'll get some pics to post, but Thomas' ridge hasn't really changed at all since we first noticed it (again) back in the fall. It hasn't gotten better, but no worse either! His is primarily/worse on top of his head, more so than on his forehead. I'll get some pics though. Developmentally, I guess we never had any concerns with that, he's doing great. Ahead on physical milestones and doing really well with talking now. Lots of words, some 2/3 word combos. He can't name a single body part... lol but can tell you what noises cows, horses, rooster, chicken, pig, dog and cat makes!

momoftwo

04-24-2009, 02:25 PM

:newsSo Logan is now 21 months old and she is wonderful! :cheer
As I have mentioned in other posts, she is like a completely different baby- different than the baby we brought home from the hospital and different from the little girl we had up until about age 17 months! She is so happy, playful, outgoing (a little too outgoing for me- she will walk up to ANYONE), just so full of life! DH actually commented about a month ago - "I wonder if her cranio has been an issue since she was born. Maybe it wasn't the acid reflux and colic at the beginning. She is a completely different child. I bet she had pressure since she was born." :thudMy jaw hit the floor! BUT, I think he is right. Since everything came to "crisis point" last fall and her head had changes, presumably from ICP "blowing" the skull plates out, things have gotten better.
:grouphugTHANK YOU ALL FOR THE PRAYERS FOR LOGAN!! I am in tears right now thinking about last fall and the hell we went through. I could not have gotten through it without you all!! My heart aches remembering what was going on with Logan and how helpless I felt. But with y'alls guidance and support I never gave up- and pushed AND PUSHED for answers.
We have high hopes that the worst is behind us and that she will continue to be a "normal" happy child.
She is still in speech therapy, but she made a lot of progress. She has a lot of words now- we are working on her saying more than just the first syllable. She has also started to put two words together. She is so smart too. The other morning I was folding up the empty box of waffles to recycle and Logan looked at me and said, "by mo, by mo"- I said, "That is right Logan, mommy needs to buy more." :giggle

I FINALLY got some pics of Logan in the tub last night. What a pain in the arse! She moves so much- these are the best I could get! I honestly don't think her headshape has changed since December. She is still long and narrow, especially from ears forward, Her ridge is maybe a little bit softer, but I think her hair growing out also helps to camoflauge it. And although these pics aren't side ones, she still has the "dolphin forehead" (Dr. S's words). I think I like Larkin's term, bulbous, better.."dolphin forehead" sounds freaky! I do see some triangling when I look down at her- but no worse and I seem to notice it more when her hair is dry.

http://im1.shutterfly.com/media/47b9da05b3127ccec6a4c0e7b8cf00000040O08AcNXLZi1ZtA e3nwM/cC/f%3D0/ps%3D50/r%3D0/rx%3D550/ry%3D400/
:pottyPotty pic!

http://im1.shutterfly.com/media/47b9da05b3127ccec6a5b531d8f700000040O08AcNXLZi1ZtA e3nwM/cC/f%3D0/ps%3D50/r%3D0/rx%3D550/ry%3D400/

http://im1.shutterfly.com/media/47b9da05b3127ccec6a5e050191400000040O08AcNXLZi1ZtA e3nwM/cC/f%3D0/ps%3D50/r%3D0/rx%3D550/ry%3D400/

I just wanted to add- Logan was in to see her pedi about two months ago and the pedi said,
I just want to apologize and just let you know how sorry I am that we didn't or
couldn't help you with Logan last year. Although we are doctors, we don't know everything and we are learning too. So thank you for educating us. From looking at Logan we would have never thought that her cranio would have caused any problems...but from seeing her today it is so obvious. She is a completely different baby. It is amazing.

I was SHOCKED! It made me feel good. An intern was in the room and the pedi explained all of Logan's symptoms and issues to her and commented that you need to watch even mild cases because ICP CAN be an issue!

dannlark

04-24-2009, 03:55 PM

Amy, that's so wonderful!! You brough tears to my eyes!!!!! It made me remember all the frustration and fear we had trying to get Ian diagnosed and for someone to take what were were seeing seriously. Your Ped sounds like she's learned a lot through you and Logan. You should be so proud of yourself!!!!! (((HUGS)))

I can't believe what a big girl she looks like now!!! She's beautiful and I only see softening going on with her head shape. I can't wait to see what she looks like in another 6 months!!

mckennasmum

04-24-2009, 06:37 PM

she's looking wonderful Amy and so great to hear she's come so far and life is so much better for you guys!

Shar

04-24-2009, 06:48 PM

Amy, she is looking so grown up! I am so glad to hear how much things have changed for her and your family! You have such a story to tell with all you have been though and have hope to offer to moms who might be in the thick of it!

mummybeelee

04-25-2009, 06:37 AM

Wow Amy! That is wonderful that your doctor has been willing to learn from you guys and acknowledge what you have been through. I am sorry you had to go through so much and push so hard to be heard:hugg

Logan is looking great and it is fantastic to hear how well she is doing :adore

Since our appointment on Tuesday, it looks like we are joining you lovely ladies and gorgeous kiddos in the mild metopic no surgery camp :) Noah appears to have his metopic, anterior fontanelle and sagittal closed early but with no secondary characteristics of cranio. We haven't done a CT so don't know for sure that they are closed but he has ridges on each suture, a slightly narrowed head shape and a prominent occiput. No pinching or narrowing or trigon or bossing going on though so no surgery recommended. I have a thread with the full detail for those interested over in cranio chat (and a follow up in CS).
Developmentally, Noah is doing great. Totally on track or ahead in all areas except speech. He doesn't say any words at all yet (20mths) or even copy sounds and only has a few signs. His hearing was tested and is perfect so we have a referal in to SALT (she already works with my older two kids so hopefully we should get in with her quickly). We are going to follow up with the NS in 6 mths if we still have concerns so I will be keeping an eye on his head but hopefully the NS is right and there is no surgery in Noah's future :D

I need to get some up to date pics of my little guy. It sure is tricky at this age though isn't it? Noah is more interested in grabbing the camera off me and trying to throw it in the bath than letting me take pics! :lol And any other time without wet hair, he has such a heap of curls that his headshape is impossible to see!

All the kids on this thread look and sound like they are doing wonderfully. Such gorgeous kids all of them :adore

Mindy

04-25-2009, 11:59 AM

Amy,

Logan looks fantastic! I can't believe how much she's grown. I'm so happy for you that she has taken such a turn around. I remember how difficult a time you were having with her. As I was looking at your post, I was scrolling down to look at the pics and my daughter was with me. She said "is that Shane?" Must be the typical mild metopic head shape that she recognized :o) I thought that was funny! I don't think her head has progressed either since you last posted pics! I do think that things are softening up. Isn't it weird how the shape can look so different with wet and dry hair? I thought the same thing!

Bee, I'm glad that you are joining us! We'd love for you to keep us posted on Noah's progress. I've found that it is less challenging to take pics when Shane is in the bathtub since he is more confined to one area. Let us know what happens with his speech eval. I know some kids that didn't start talking until 2. Hopefully, Noah will catch up soon!

mummybeelee

04-25-2009, 05:42 PM

I added some pics taken tonight to my profile. I'll try to figure out how to post them side by side with similar angles taken a few months ago later. I don't think anything has changed much but it has only been a couple of months and he is at the age of his head growth slowing down.

I tried to get some cute ones with his hair all super curly after his bath but just as he was getting into the idea and smiling for me, he fell backwards off my computer stool and cut the back of his head on the bottom shelf of my desk! :eek: Lots of blood and one panicky mummy but it turned out to be a tiny gash and he is far less bothered about it than me :doh I'll be keeping an eye on him overnight and hoping he is fine. I keep remembering the NS explaining on Tue how he won't operate on the back of the head as it is so risky and it is injuries there that cause problems for kids:react I swear this child is determined to tip me over the edge!

awisnia

05-06-2009, 11:30 AM

Hi,

I haven't been here in a while... Back to work, not much time at home... But here are some recent pictures of Wil's head. Now he's almost 1 and developing fine.

Ania

http://i491.photobucket.com/albums/rr280/awisnia/front2.jpg

http://i491.photobucket.com/albums/rr280/awisnia/top2.jpg

Mindy

05-06-2009, 08:41 PM

Thanks for sharing your pics, Bee and Ania!!

Noah's forehead looks great! I don't see any progression. I love all those curls!! What a cutie!!

Wil is getting to be such a big boy!! He is precious!!! His head still looks nice and round.

Thanks so much for your updates!! Hope you continue to check in here every once in a while just to let us know how you all are doing!!!

athenamacd

05-12-2009, 09:16 AM

Hi there everyone! I wanted to find my way into a thread for mild metopics with no surgery recommended, so I have other opinions as time progresses with my daughters condition. Our story is posted on the welcome mat under looking for opinions and support. But long story short, my 5 month old daughter had no head growth from birth to 4 months so we had a ct done which showed her metopic was fused at birth but no trigon. You can feel the ridge beneath the skin, but being that her head is so little it hasn't changed shape yet. We were referred to a NS that we saw a week ago who took measurements and her head finally grew 1/2 inch. So the NS actually gave us the option to see a craniofacial surgeon or just wait and see. Being that she doesn't have pressure build up at this point we opted to wait and see. They think her head may stay small enough that it won't ever show severe signs, but I guess that's the wait and see part. Everyone's kids on here look great and make me feel that we have made a good decision by waiting to see what happens with her head shape. I have one concern though, our daughter tends to have episodes at night where she wakes up with a shrill scream and I rub her head to get her back to sleep. This has been happening since birth and I don't know if this could be related??? Anyway I wanted to introduce us and give you some history and I will periodically post pictures if I think we are seeing changes. Thank you all for letting us know we are not alone!!!

Lukeysmommy

06-06-2009, 07:10 PM

Shar

06-06-2009, 08:48 PM

My daughter has slightly splotchy red patches up her ridge. She was born with it (and the ridge), it's not something that appeared one day. A few of my other kids have the same red splotches, they are common in fair skinned kiddos and usually go away as they get older. Totally unrelated to cranio. Is that what your seeing on your boy? I don't have any answers regarding the head banging. My dd doesn't do this. My dd is having no issues and is developing typically.

Welcome, btw! Hope you do post some pics as it is fun to see the little ones and helps us get an idea of how severe the fusion is.

Carsmom

06-06-2009, 09:33 PM

Mindy - my two cents - if you feel the ridge extending to the top of his head, I would have a cf or ns take a look at him again.

I don't want to scare anyone, but my son was diagnosed with mild metopic when he was 8 months. I was given a lecture then by the cfs that "everyone's head is different, and that is just your son's head shape. You have a beautiful son, enjoy him." Anyway, fast forward until April, my son is 28 months, we decide to take him back to the cfs b/c we felt the ridge extend to the top front of his head - and sure enough his saggital suture had closed.

We had our son evaluated when he was 3.5, 5.5 and 8 months because we thought his head shape was off. He did not develop the metopic ridge until about 7 months.

Developmentally he is doing great! He speaks in full sentences, has great comprehension, memory, etc. - and is doing well socially and emotionally as well - so no other indicators besides the ridge.

A different NS that we saw on Monday said that the metopic/saggital combination is not typical, but it makes diagnosis more difficult (w/o a CT) because the metopic stops the saggital issue from affecting the face (i.e. the forehead does not protrude).

So just check the top of their heads!

Even at almost 2.5 years old, the CT called the degree of mis-shapeness "mild".

Mindy, my son's head looks the same as your's in the front, but it is more narrow on the sides.

Mindy

06-07-2009, 09:26 AM

Do you have any pics you can share with us of your son? Shane's ridge does extend up to where his soft spot would be, but it is closed now. I thought the metopic suture is the suture from the soft spot down to the nose? The sagittal suture begins behind where the fontanelle would be, right? Do you have any pics of the CT scan for your son? Thanks for the input. Shane's ridge was always on his forehead, but as it closed, it did so by continuing up his forehead to where the fontanelle was. This is what is supposed to happen as it closes. Also, 7 months old for your son, is well within the normal time frame for the metopic suture to fuse. It can close as early as a few months of age and still be normal.

momoftwo

06-07-2009, 04:41 PM

Lukas is 15 months and mild metopic. Recently he has started hitting his head quite often plus has some discolouration (he is very on his forehead right over top of his ridge. I asked his family dr when we were there for an ear infection and he said the discolouration had no connection to the ridge but I wanted to see if anyone else has seen this in their kids. With the head hitting I keep trying to convince myself it is behavorial as he is doing when frustrated about something (i.e. mommy won't let him play with the tv remote!) but in the back of my head I am always thinking of ICP. I'll try to post some pics when I get home from work but for now I'd appreciate any thoughts/opinions!

Amanda

Logan is 22 months old and her ridge still turns pink/red when she is upset, crying, out in the sun, sweating or exerting herself- it has since she was born. She is fair skinned too. It is pretty normal for it to stick out more when they get upset too.

As far as the head hitting. That could be a number of things- some normal. Could be frustration, teething, ear ache...I would just watch him. If it does seem to happen a lot/frequently, then you could journal when he does it- you know what he was doing around that time, etc.. and see if you notice any patterns.

Keep us posted!

Lukeysmommy

06-08-2009, 05:31 PM

The discolouration is a light brown, irregular shape - like a tanned patch in the middle of his forehead. It has been constant since I first noticed it about a month ago but this was around the same time the nicer weather started and we are outside all the time. Maybe the slight angles on either side of the ridge are picking up more sunshine than the rest of his face!

I will continue to watch the head hitting and look for patterns. Of course even if it is behavioural I have no idea what to do about it! So far we are doing the same as when he hits other people - it's not nice to hit - be nice to Lukey's head . . . etc.

Sandra

04-11-2010, 11:49 PM

Hi there, all of this is so interesting! I am new and had wanted to start a new post, but can't find where to do that. This seemed like a good topic for me to chime in though! My daughter Kate is 23 months and has mild metopic synostosis. We had seen a few dr's who thought it was the saggital suture that had fused, but the CT scan had shown otherwise. Dr. Forrest a crainopfacial surgeon at Sick Kids in Toronto was surprised at the results, beacuse Kate has the frontal bossing, from her ears forward her head is very narrow and she has pinching in at the temples. Her ICP is fine. She is very mild and if I look for it, her eyes do appear a bit close together. We had started this journey when she was 15 months old and are finally getting some answers. He isn't worried about any developmental delays and we feel she is fine as well. We go back to the CF in 10 days after a 3 month "wait and see" and my husband and I feel the shape of Kate's head has gotten a bit worse. Kate just had an appt at Sick Kids with genetics last week and they are testing her for Marfan syndrome which can sometimes be related to Crainiosynostosis. We are quite torn on whether we think she needs sugery. He had mentioned possible other smaller surgeries last time we were there. My biggest fear is how this may impact her self esteem if we do not correct this now. Obviously, these are our kids and I don't want her to go through any surgeries she doesn't need to. She is beautiful to us and it doesn't matter how mis shapen her head gets, but I worry about her future. We also have a five yr old daughter Emma who has no indication of any synostosis. I don't want this to get worse and have Kate to grow up and resent us for not doing this for her now before she can remember it. The CF said we will go over everything at the next appt and if we choose not to do anything now, there may be smaller sugeries he can do in the future if she wants that, but I know it can become more complicated the older they get. I am so glad to have found this site, especially right now, when we are facing such a big decision. It's so nice to know we are not alone and all of your children look beautiful!!

fullhouse3b2g

04-12-2010, 09:12 AM

Hi Sandra, welcome to CK! There's a lot of great support here.

I think it's interesting that the geneticist is recommending testing for Marfan's syndrome. Does your daughter have any other medical problems?

My family has a connective tissue syndrome very closely related to Marfan's although we are not sure exactly which syndrome they have. A lot of the characteristics overlap. If they are concerned about Marfan's for your daughter, please make sure that they check for Loeys-Dietz syndrome..it is almost identical to Marfan's, but it is very important to distinguish between the two of them.

Mindy

04-12-2010, 10:29 AM

Hi and welcome to Craniokids. Deciding on whether to have surgical intervention is such a tough decision for everyone, especially these mild cases. What helped with me my decision was thinking whether or not Shane looked "different" than the average person because of his head shape. Was this something that was going to make him feel self-conscious about when he gets older? Would another child look at Shane and wonder what was up with his head? Would he be picked on for it? Basically would this be a contributing factor for self-esteem issues? Does anyone ever say anything about the shape of your daughter's head? If I could have answered yes to these questions, than surgery would have been our decision. It really is such a personal decision and what would be right for one family might not be right for another. The way you describe your daughter's head shape sounds very similar to another member's daughter. Her profile is Momx6. Her head shape looked more sagittal, although she had occipital bossing as well. She was born with a metopic ridge. I'll ask her mom to message you (if she doesn't see this) because she had the same concerns as you do regarding surgical intervention.

If you don't mind sharing some pics of your daughter's head shape, we'd love to offer our non-dr. opinion.

Shar

04-13-2010, 03:26 AM

:howdy

Thanks, Mindy! Yeah, it does sound like your daughter's head looks like mine. You can take a look at the pics in my profile, if you'd like. Also, like Mindy said, we'd love to see some pics of your daughter. We haven't done any genetic testing for my daughter. She's doing great developmentally and I feel the same as Mindy posted above me re: surgery. It's tough at times to see the ridge, and (in my daughter's case, but not all metopic ridge kiddos) the bossy forehead (that Amy called the "dolphin" forehead on her daughter) and the bossy rear. We've had a ct scan done and her sagittal was open, so I attribute her head shape to being breech. :dunno At her last appt, her dr said she is narrow on the sides, bossy front and back, but that she was within normal range and didn't recommend surgery. That's our story in short, lol! If you have any questions or anything you want to discuss, please do! Welcome to ck!

erica

05-14-2010, 10:55 AM

My son was not diagnossed till this year he is 2 he has mild metopic with trigon we saw a neurosurgeon who said he was mild and may need surgery later but not now and to go back every 6 months. He also refered us to a plastic surgon and a opthomologist. He wants them to check for ICP then that will determine if there is a need to have surgery now. But my concern is what if in a year he needs it should I wait or just have it now when it will be easier on him or just wait to see if he is goin to need it.

Mindy

05-14-2010, 05:45 PM

Hi Erica,
Welcome to Craniokids. The good news is that if your son is considered mild and he is 2 yrs old, chances are he is not going to progress to the point of surgery. The skull does most of its growth by expanding in the first 18-24 months of life as the brain rapidly grows. After 2, the rate of growth slows down substantially. They did an optic nerve test on Shane too, but honestly, it isn't really a true test for ICP as the pressure needs to be REALLY high for that to be affected. THere have been a few kids on here that have had raised ICP with negative optic nerve tests. There have also been older kids on here that have gone through the surgery and they all seem to do fantastic no matter what the age.

Milli

05-30-2010, 12:48 AM

Hi everyone my 11 month old has mild metopic our surgeon told us that its up to us if we want a sugrery done or if we want to wait and see...Did anyone esle go thought that and what did you do ? if you waited did you ended up having one anyways?

Mindy

05-30-2010, 09:01 AM

Hi,

We opted not to have surgery, and honestly, it wasn't ever offered as an option, until our last visit to a specialist in NY. He was on the fence, but stated that he could do it if we wanted to. I think it is important to determine the severity of trigonocephaly when making the decision for surgery. If your child has a simple metopic ridge with very little pinching above the eyebrows, surgical intervention is normally not necessary. If the trig. is severe enough to change the appearance of the head and cause an abnormal appearance,then I think surgical intervention is the best way to go to give your child both physical and emotional well-being. Thats just my opinion. i have been waiting and watching my son for the past 2 1/2 years and so far, he hasn't progressed enough to warrant surgery. But, I often question if he is progressing and this waiting is a hard place to be.

Lukeysmommy

05-31-2010, 04:27 PM

We are in the same category. Surgery was never really an option, except with the possibility of a small cosmetic procedure to smooth out the metopic ridge in a few years from now. Even that we were told would likely be unnecessary.

Every time Lukas hits a growth spurt the metopic look becomes more obvious. Then he'll fill out a bit and you don't notice it at all. I see you're in Toronto - you may want to send a message to Janet. Her daughter had surgery for (moderate?) metopic at Sick Kids a few years ago.

Janet

05-31-2010, 06:22 PM

navyjen

08-03-2010, 03:29 PM

I wanted to add onto this thread to keep a log of our progress and so new members can read about it too. Plus I like reading about where all the other no surgery mom's and kids were at at Camryns age. Camryn will be 14 months tomorrow and is doing well. Developmentally she is on track she is saying lots of words"On her terms." She says hi, uh-oh, momma, dadda, dog, DJ, light, night night and a couple others. I think she said bad dog yesterday. It was when she was 11 months old when Dr Fearon said he wouldnt consider surgery on her even if I wanted it. I posted some new pics in my album 14 months as i have issues posting here. Her ridge is still huge and is bigger from her hair line to where her fontnalle was like others have said. And as others have said some days it glares at me and some days it doesnt. I think she looks better from the side and front on and worse from top down but if Dr F said she was a varient of normal then that is good for me.

Mindy

08-03-2010, 09:30 PM

Thanks for the update, Jenn!!! Camryn is such a doll! Her head looks fantastic!!

Jess33

08-04-2010, 01:32 PM

Hey, I guess i am joining you guys.. Adrian is definately mild metopic and the doctor doesnt beleive surgery is required. He is 8 months old.. still waiting on a ct to see about the saggital, but the doc was optimistic

fifitz

08-22-2010, 05:40 PM

Mindy, I am new here, but for what its worth from a not-yet-professional head-picker, I think that Shane looks totally normal and that for someone who is not aware of this they would never even ask themselves the question as to whether or not his headshape was anything other than normal. Honestly.

Fiona

Mindy

08-22-2010, 10:39 PM

Fiona,
Thank you very much for your input on Shane. It is so appreciated!! Have you shared your story here yet?

chattydani29

10-01-2010, 12:16 AM

Its really nice to see that there are others not there on the wait and see for the Metopic Ridge. Its so scary and it worries to the point that its sometimes hard to enjoy my daughter. I guess I am just scared that if things gets worse the DR might not do anything at all. She is 5 months and we went to the Pedi on thrusday after our family dr was concerned that she couldnt find her soft spot and cuz of the flatness in the back of her head. BEfore we got to the DR I noticed the ridge. Reading on the internet can really scare you. Something I really need to stop doing. But the pedi said that she is very developmentally on tract for 5 months. He said that she should improve in time. and that her head is still growing like it should. And he did find her soft spot. Its just small. I can feel it still.
We also saw another DR a trusted family DR before we went to the PEDI and she wasn't concerned either as was another dr at the clinic that we also trust.
I just wish this worry would stop comsuming me so that I can enjoy my daughter. I think she is beautiful right now. I am scared its going to get worse though. It sure is nice to see ppl who didnt do surgery and things improved. It really gives me hope.
Here are some pics of my Miley.

http://i826.photobucket.com/albums/zz187/danisteweart4399/IMG_0571.jpg

http://i826.photobucket.com/albums/zz187/danisteweart4399/IMG_0566.jpg

http://i826.photobucket.com/albums/zz187/danisteweart4399/IMG_0565.jpg
http://i826.photobucket.com/albums/zz187/danisteweart4399/IMG_0563.jpg

http://i826.photobucket.com/albums/zz187/danisteweart4399/IMG_0562.jpg