"Mercedes Benz" Syndrome

[Terry17]

Has anyone ever heard of this syndrome? It gets it's name because ususally the back half of the Sagital suture and the two lambdoid sutures are the ones that are fused (fully or partially). Our Isaac had the back half of the sagital and both of the top 1/3 of the lambdoid sutures fused. Isaac went to see a geneticist and they did not want to test him for any syndrome because he had no other signs or features consistent with a syndrome with the exception of the fused sutures. However, he did some research and came up with this syndrome. It afflicts babies of Hispanic/ Spanish decent more than other ethnic groups. The geneticist did say Isaac doesn't have any of the other issues associated with this syndrome, but since he is half Hispanic and half Anglo and had 3 sutures fused it was worth looking into because they can perform genetic tests to confirm. Since the folks on this site are so informed about anything to do with Craniosynostosis I thought I would ask.
On a different note, Isaac turned 1 on 1/8/10 and started walking 2-3 weeks later. Developmentally the Dr's say everything is great, but when more information comes to our attention it worries us all over again. It felt like we were past it, but I guess it never really goes away. I still feel very blessed and lucky and don't mean to complain because I know others' have had it worse than us. I pray for all those babies!!!

[momof2withcranio]

I personally have never heard of this. That is interesting. will be praying for you that all goes well with future apts and many hugs to you and your little man. He is to cute.

[Amy K]

There is a mom who posted in The Welcome Mat a week or so ago whose baby was just diagnosed with this I think...let me see if I can find that thread..

[Amy K]

Here ya go: http://www.craniokids.org/support/sh...ad.php?t=14714

[Terry17]

Cams mom - THANK-YOU! I found leland's story and posted a message to his mom.

[evergreenmom]

Don't know anything about this really except that I think Dr Fearon published a paper on it... if you look him up in the medical database you should find it... He mentioned it when we saw him the other day in Dallas during Xander's one year post op appointment. He also mentioned that these children usually have a chiari malformation due to restricted space at the back of the head... sorry I am not more informed... best wishes-

[marisajo]

Here's the study abstract: http://www.ncbi.nlm.nih.gov/pubmed/20048621

[Terry17]

I had just sent a message to "Evergreen" and told her we found the article and returned to the Neurosurgeon and sent pictures (ct scan, Isaac) and a brief history to Dr. Fearon. Both said they did not believe he has a syndrome and doubt he has a true Mercedes Benz pattern of Cranio since only the very top of his lambdoid sutures were fused. I know the geneticist meant well, but he sure got us upset all over again. Thanks for all your help. As you know, once this happens you worry that much more.

[evergreenmom]

Terry-

I am so glad that was helpful- CK is so great for being a place we can share what we know and help each other out along this crazy ride!! Dr Fearon is amazing I am glad he was able to give you good news!!

I can't remember off hand- does you grandson have a chiari? If so do you know how big is it? I am just curious because Xander has one(5mm) but so far we don't expect it to give him any issues- just something that needs to be monitored as he grows.

Best wishes...Kristin

[Terry17]

From what our Neurosurgeon said at this last visit, Isaac does not have a Chiari Malformation and the Dr. did an over correction "barrel staves" etc. when he did surgery, which should give Isaac plenty of room and thus avoid the Chiari problem. God willing all will be well. Thank you so much for your responses. The folks on this site are a true blessing!!!!