Could it be syndromic?

[Etinker]

Hi everyone,
SO my daughter Maya was diagnosed with left uni-coronal and actually had her surgery Nov 2nd. I looked at her CT scans and was pretty sure her metopic was also fused (this was at 5 months) but the doctor was on vacation and the NP who finally called a month later didn't seem to think it really was. However when the doc came out of surgery he confirmed it was closed. I know multiple sutures makes a syndrome more likely. She also has developmental delays in gross and fine motors as well as speech. I'm not sure what to look for in her fingers and toes but she looks pretty normal to me.
She's never been to a geneticist - but I'm pretty sure I'm going to do it now - but I'm wondering if I'm just being a crazy cranio mommy or something else is really going on.
Any help would be appreciated!
-Beth

[*jules*]

Hi Beth. I'm not familiar with cranio syndromes and my son also never had genetic testing. I think (and I may be wrong) that if there was a syndrome involved, there would be other tell-tale signs besides the fused suture. I'm sure some of our moms who have syndrome experience will give you their opinions as well.

As for the developmental delays, I think they're kind of common (or seem to be on here) in non-syndromic cranio kids. My son also had/has some delays but has been catching up quickly thanks to the help of EI. I wouldn't base anything on that. Hugs and let us know if you get the genetic testing done :)

[fullhouse3b2g]

You may want to bring it up to your doctor. Just tell him/her that you have heard that multiple suture cranio can be caused by a genetic syndrome and ask if that is a consideration for your daughter.

With my kids, they have always had other issues. It should have been obvious to a doctor that we needed to see a geneticist. It wasn't until my youngest was in the PICU after surgery for a brain cyst that the doctors noted that he had a heart defect as well. That's when they suggested that we meet with the genetics team. I'm not sure how it normally happens though?

[Etinker]

When we met with the CF doctor he said usually they set up appts with the neurosurgeon, ophthalmologist, geneticist all at the same. No one seemed to do that and we had no idea so they managed to sneak us in and we saw the neurosurgeon. We had already seen the ophthalmologist and new she had eye issues but the geneticist never cam up. They made it sound like it was routine at CHOP to see them if you had cranio.

I don't know - at first I thought I'd post to ask wether I should see a geneticist. Then I thought - I knew I'd tell myself to go -just to be sure. If she does have something it would be good to know how to move forward and if she doesn't then I know I don't have to stress about it.

[craniomommynbaby]

It wouldn't hurt to see a geneticist. They have you do a detailed family history along with blood testing to see what syndrome matches, if any. In syndromic cranio, usually that person has a 50% chance of passing it on to each of their children. It is nice to know what syndrome is present so that even if your child does not have other features, you all will know what to look for in your grandchildren.

[Mindy]

Not sure if this is the case with your daughter, but research has shown that it can be normal for the metopic suture to be closed by 5 months (actually 3 months according to the studies). So, unless in was a pathological closure (at birth with signs of trig), then it may be ok.

[Etinker]

Thanks - I don't know nearly as much about metopic since I was so focused on coronal. There was no ridge. Its hard to say what head shape issues were due to the coronal suture being closed or something else. Of course since the surgery's been done it looks pretty normal either way!