Metopic - advice before doc visit?

[christyo]

Hi, there -

At her 2 month checkup, I asked my daughter's doctor about her head shape because it seemed flat and high in the back, so I thought that maybe she had flat head syndrome. The doctor told me not to worry about it, but I went out and got one of those pillows for her to use when she sleeps. A couple weeks after that visit, I noticed that she had developed this odd ridge down her forehead, which, after some googling, led me here.

We have an appointment on Monday for the pediatrician to take a look, but I'm a bit worried because we are stationed in Germany with the military. The hospital here has 1 pediatric neurologist and no pediatric neurosurgeon, which I'm afraid will lead them to tell us to "wait and see." Elena has a pretty prominent ridge, but when I look down on her, I don't see a triangle -- but I do see that the right side of her forehead has a larger lump than her left side. Her eyes seem to have gotten closer together than they were when she was born and she tends to go cross-eyed more often now.

I've tried to take pictures as best as I could. Would you please take a look and tell me what you think? My husband wants to push for corrective surgery because he read that kids with metopic ridges have higher incidences of developmental delays, and he has a 13 year old daughter with severe autism and profound mental retardation. I'm trying to keep him calm and not freak myself out.

I'd really appreciate any advice you could give!

Thanks!
Christy

[charliesmummy]

Hello & welcome to cranio kids. Your daughter is adorable by the way. I do see the ridge & slight pinching of the temples so i would try & push to get her seen by a craniofacial specialist. There are a lot of children that develope ridges without it being cranio so try not to worry yourself. Overall her headshape looks prety good. Your doing a great job in picking it up early so well done mummy xx

[mjlevpt]

Hi and welcome to craniokids! Your daughter is beautiful!! I do see the metopic ridge also, althought I don't see trigonocephaly which is what the surgeons will use to classify metopic cranio. Being that she is still so young, I would see a craniofascial or neurosurgoen and continue to monitor her for any changes that may lead to trigonocephaly. My son also developed a prominent ridge at the age of 2-3 months old, but he did not develop sig. trig and we've been monitoring him. He is now 19 months old and doing great. You can see pics of him in my profile.

As far as your husband wanting to do the surgery b/c of the studies that he read, I posed the same question to our surgeon. And he told us that all the studies prove is that there seems to be a higher incidence of delays with kids who have metopic cranio, but surgery does NOT prevent the delays. There doesn't seem to be a cause and effect relationship to this; all they know is some correlation exists. As for chances of increased pressure, well, that is rare, although we've seen some cases on here. But, you may be happy to know that there are several moms of kids who mild metopic cranio and metopic ridges that have not gone on to develop neuro. issues and delays.

I'm sure you'll hear from other metopic moms on here. Larkin, do you think her head looks a little like Ian's did when he was that little??

[xl1200c]

I agree it would be good to see a pediatric neurosurgeon or a pediatric craniofacial surgeon.

I can clearly see the ridge, but it is possible for that to not develop into the triangle shape. In the meantime, I would recommend taking pictures from several angles on a regular basis, so that you can notice and prove any changes for the better or worse.

My daughter had a ridge for a bit when she was an infant and it is gone now, she has a beautiful flat forehead. My son got a ridge around 6 months and it progressed to the triangle shape. We did end up having a CVR surgery for him.

All of our experience with our pre-op (doctor visits and their opinions and such) and our surgery is written in our story if you care to see it here: http://www.craniokids.org/support/showthread.php?t=2139

Also, here are some tips for during the process of getting diagnosed:
http://www.craniokids.org/support/showthread.php?t=3391

Feel free to ask anything you want.

All the best to you,

[dannlark]

Your daughter is BEAUTIFUL! Welcome to CK, so glad you found us. I can definately see the ridge, but looking down on her, her forehead still looks nice and square. I can see some pinching at the outer eye brow area and that's what I would be keeping my eye on. I agree that you should continue taking pictures at the same angles as you did here. I think the flatness of the back of her head is more puzzling to me. Either positional plagio or, I remember that Sadie's Quintin had a flat back of his head with his metopic cranio. Make sure she gets a lot of tummy time and sitting time. Ian's trig. developed very rapidly so keep an eye on her. Note any changes.

As for the studies, we're in the midst of a language delay issue with Ian right now (he's 18 months), and he's 5 months post op from his CVR/FOA, so I believe the studies that show the surgery doesn't "correct" any learning delays with metopics. They don't know why this stuff happens with some metopic children. Not all of them are affected that way. We're not even sure if his language delay is a direct result of the cranio, or he's just lazy with 2 bro's to speak for him, etc...???? But as a cranio Mom, it's hard NOT to think it's related.

Keep taking those pictures!! She looks more like Sadies, Q I think than Ian.... Try not to freak out if you can help it. I hope you are able to get all the help you need. Would they allow you to travel elsewhere to consult with a NS or a PS? Please keep us posted and stay strong, Mommy. This is where you have to be tough and flight for your little girl and get some answers that sit right with you. You have time (let you husband know this!!). My DH and I would say that the worst thing to happen would be that it would continue to get worse and in the end, we'd have surgery to correct it. It's kinda like, if you're going to go down that road, try to at least take in the scenery while you're moving along... ((HUGS)) You guys will get it figured out...

[xl1200c]

I also meant to add that there are a few great specialists around who will give a bit of consult advice through e-mail. It is certainly not the same as seeing your child, but it might be a valuable source of info.

Larkin, can you chime in with Dr. Fearon's e-mail?

Christy, not only could Dr. Fearon or another e-mail consult give you a bit of info, but maybe they could recommend a doctor that might be available for you and give you ideas on how to proceed? Maybe/maybe not?

[dannlark]

Here you go...

Dr. Fearon's e:mail:

cranio700@aol.com

Send the pictures you posted here as well as a brief history and he's REALLY good at getting back to you quickly.

[christyo]

Thank you so much for your replies! I just emailed Dr. Fearon with photos and Elena's history. She's already been referred to early intervention because she hardly uses her left hand at all, so I'm wondering if these things could tie together.

I've been poking around this site, reading lots of histories and they definitely give me a lot of hope. Thank you so much for sharing your stories.

We're hoping to get a referral back to the US - probably to Walter Reed. My husband is from the Boston area, so he'd really like her to go to Boston Children's Hospital, but looking at their website, it looks like they don't accept the Tricare military insurance, so we'll go wherever they accept that, I suppose.

I know I'm getting ahead of myself...I just feel like I need to have a game plan even before I see the pediatrician, because sometimes you can wait forever to see doctors here.

Thank you, again, for your advice!
Christy

[xl1200c]

Boston Children's was out of network for us, but because they used a team approach and they have so much experience, we were approved by our insurance to go to them. We were thrilled. If you end up considering them further, please let me know, I have lots of references on their doctors and other tips as well.

Good luck with the pedi, and please let us know how you make out with Dr. Fearon.

[christyo]

Hi, there -

Just an update. This new pediatrician is great and ordered a CT scan, then called over and told them to get us in tomorrow. He was feeling around her head and says that he thinks she may have another suture fused or fusing... Is this common? Has anyone else had that?

Hopefully, we'll have the results of the scan soon. I'm pretty nervous, but whatever the scan shows, it's better to know than not.

I really appreciate everyone's advice here!
Christy