Question

[Christina's_Mommy]

I have been reading alot about Muenke being a non-syndromatic syndrome. What exactly does that mean? I would think that non-syndromatic would mean that it wasn't a syndrome but if that is the case, then why do they call it a syndrome and why does it have a 50/50 chance of being passed down???

[Lisa]

I have read that too. I think it is because it doesn't reflect the usual visual characteristics of a syndrome, like specific similar facial features (like down syndrome). Meaning that you can have it and not even know it. (Like I am pretty sure I am).
But yet there are other similar characteristics that patients with muenke do have, like cranio, fat toes, mild hearing loss, and dev. delays.
Does that make sense at all? I hope I am correct.

[Christina's_Mommy]

I think so. Christina has short, fat toes, short fingers, low placed thumbs, wide set eyes, low-set ears and a wide bridged nose along with the cranio she had. My mother and I have alot of the same features. We had no idea she was cranio till July for sure. her ped thought she may have had something in June but couldnt' get seen for it till July.

[Lisa]

Also, how is your genetecist pronouncing this? Our genetecist that actually worked with Dr. Muenke, pronounces it "Moon-Kah". I'm really getting tired of other dr.'s saying "monkey" syndrome! And I correct them too!

[Christina's_Mommy]

I wish I could verbally say it for you. Let me see what I can find. Mu-nee-kee is the best I can think of to say it on here. I feel like a dictionary. lol

[Lisa]

And yes, I have very short and fat toes and fingers. They had said they thought Bradley's ears were low, but I don't really think they are. He does have a low hair line too. His eyes are a little wide, anxious to see that surgery will do.

[Lisa]

Like Moo-knee-key? I had never heard it pronouced that way! I though our genetecist would know the correct way since she worked with Dr. Muenke himself, so I don't know. I just keep saying Moon-kah lol

[Christina's_Mommy]

That is how I have heard it anyway. Who knows. At least if our kids will have something that sounds like a monkey syndrome, at least they don't look like monkeys. lol

[Lisa]

yes, very true. lol

[beccad]

I have a question for ya'll. How did you know that your little ones had this? Is it something that I should have Julianna tested for since she is a coronal baby? This is the first I've heard about it. I feel kind of in the dark about some things. If it were not for this site I would not have know to go to the eye doctor for Julianna. I just happened to be there with my son and told her about Julianna and she asked if we had seen anyone and I said no. My pedi didn't even think anything was wrong with her and I had to find a NS/PS because my insurance didn't cover the one my pedi referred me to. I feel like we're doing everything on our own and we have to do it all 3 hours away from home. I wish my pedi knew more about cranio.

[Lisa]

Becca- we were referred to a pediatric-genetecist from the hospital he was born in. Muenke syndrome can cause uni-coronal and bi-coronal cranio. The genetecist took a blood sample and had the results back within two weeks. They suspected it with him because of some of these other traits that are common with this syndrome, short-fat fingers and toes, wide spaced eyes, low set ears. I would be happy to answer any other questions you have and have some great articles on muenke.