metopic syndroms?

[kenleysmom]

I am new to this whole thing and have some questions I hope someone can answer for me... are there syndroms associated with metopic ridge?

[charliesmummy]

Im not sure but not that im aware of. Charlie was Metopic but no syndrome x

[*Jessica*]

I am not sure about Metopic Ridge. Metopic Cranio on the other hand? Think these are a few...
*Beckwith-Wiedemann syndrome
*C syndrome
*Trigonocephaly syndrome (maybe the same as "C" syndrome?)

Not sure what else...

[hayley]

OOh good question, i've never heard of any of those do you know any more about them Jessica?

[*Jessica*]

Gosh...my computer just froze and deleted my previous response. Basically it said, ran across the info while researching, single suture syndromes seem rare, metopic syndromes seem to have more serious health isssues other than the cranio, but I am no doc and could just be a very misinformed mom! ; )

I never did check to see if this has already been discussed in this section, I will go look...maybe some more good info if a thread has already been started about metopics...

[kenleysmom]

Thank you all so much!

[hope4C&K]

Yes there are. My son has metopic cranio with mild trigonocephaly. He has 9p24-syndrome or also called Alfi's syndrome. It is a deletion on the short arm of the 9th chromosome. It is very rare. The metopic ridge is one of the symptoms of this syndrome. I think I have read that there are other syndromes associated with the metopic ridge but I do not remember what they are.
Kristen
Mom to Caleb 3

[fullhouse3b2g]

Each of my children have at least a metopic ridge and an enlarged aortic root (heart defect) as well as various other things. When we saw the geneticist they were concerned about a syndrome called Loeys-Dietz Syndrome. So I'm assuming that metopic is associated with that syndrome.

[bri21481]

My son has Greig cephalopolysyndactyly syndrome. He has metopic with trig. His condition is rare and he was born with extra digits on both his hands and feet. Hope this helps!

[Tawnia]

I am wondering about this as well since Azi had 2 other midline birth defects.

[Mrslala]

Thanks for posting this! Lennon was also born with a bicuspid aortic valve and is very small in stature compared to her twin. I have long wondered if there might be some underlaying cause (syndrome). I'm googleing all of these right now. =)

[Danielle]

My son has Greig cephalopolysyndactyly syndrome. He has metopic with trig. His condition is rare and he was born with extra digits on both his hands and feet. Hope this helps!
My son had metopic cranio(trigoncephlay) and a extra digit on his left thumb.

[mommyjamieof2]

How do I know if my son has a syndrome and why do I need to know? He has the rige and also has a heart murmer as they called it. But he was not even diagnosed until about 4 years old he went along time before we knew he had a problem. He had heart testing done I was told he did not need to return. Does he need to have other testing done? TIA

[angeleka]

There are some syndromes related to metopic cranio, but I don't think any are related to a ridge. A ridge is usually just a ridge that forms when the bones first fuse and it usually smooths out as the child grows.
We went through a couple of rounds of genetic testing with Andrew (just a tube or 2 of blood each time) and they all came back negative. There are two other sets of tests available but they are still in the research phase so our insurance won't pay for it so we stopped where we did.
If you have some concerns about something with your child you can always call a geneticist and see what they tell you to look for.

You do not NEED to know if he has a syndrome. I think it is a person preference I guess. We wanted to know for a few reasons...
First, we wanted to know if we could pass this on to another child because it would effect our decision to have more kids.
Second, we wanted to know so we knew if there was anything we needed to look for as he grew up. If he had a syndrome that would effect him in any way other than the cranio... slow development, cause other health issues, etc.
Third, we wanted to know so we could let him know as he grew up that this was something he could possibly pass on to his own kids. I know this is something we did not need to know until he was older, but I wanted him to know before he ever thought about having intercourse if God forbid this was something he did as a teen and a little surprise came of it. I hope to keep him form doing that, but I am a realistic and know that kids find ways to do things no matter how hard you try to make sure it can't happen.

[Bruce]

Could anyone please help me get in contact with an adult with trigonocephaly (even a mild one)? I would be very grateful.
I am Bruce and my email is brucewills20082009@yahoo.com
Thank you

[AllyCat]

There isn't really a REASON to know about a syndrome unless you want to follow up on possible other problems. If there are a host of issues, it might be helpful to know so you can know what else to look out for.

On the other hand, you can just treat the other issues and not worry about having a syndrome or not.

We declined genetic testing because we live in the US with our horrible for-profit health insurance system and did not want a pre-existing condition that would later be used to deny Rohan coverage or care. He shows no signs of any syndrome and we are not planning to have more kids. If he wants to have kids later, and is concerned, he could have testing done.

If we were facing multiple issues with him, we probably would have had him tested so he had the best chance of catching problems now and dealing with the health industrial complex later.

As for the OP, I know there are certain syndromes with metopic as others have posted here (stuff I hadn't even heard of). I know I read somewhere that coronal and multiple suture fusions are the most likely to be associated with a syndrome, but not sure how accurate that is.

I think one day we'll probably all have a "syndrome" of some kind or another. Genetic variance is the spice of life. Sometimes, the variance is more spicy than others.