Muenke. Do you Know anything about it?

[maz]

Trying to find out some more about Muenke Sydrome.My son was diagnosis with this recently and my husband and i are being tested for this as well .Anyone one out there have a child with this or knows anything about it ? :dunno

[Lisa]

My youngest son that was born with bilateral coronal cranio has muenke syndrome and I found out after he was born that I also have it. I have lived a completely normal life and never knew anything was wrong or different. I would be glad to answer any questions you may have. Muenke is actually what they call a non-syndromatic syndrome in that it doesn't have many visible traits. Mild hearing loss and coronal cranio are two of the most severe traits. Right now, Bradley's hearing has tested well and I do not have hearing loss as an adult.
Bilateral coronal cranio means that both coronal sutures were fused, there is also single suture coronal cranio in which just one of the coronal sutures are fused. Feel free to ask any questions you have!

Here is an article on muenke (moon-kah) syndrome written by our genetecist and Dr. Muenke himself:
http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=muenke

[maz]

Thanks lisa.Thats helped alot.Will get back to you if I have anymore questions.

[audra15]

I'm not really familiar with it but there's a search option on the top menu bar. I just put muenke in there and there are some other parents on the board with some experience. Perhaps reading their posts might help. Good luck!

[Leighasmom]

We also were diagnosed with Muenke's and I am frustrated in the lack of information that even the genetist have given us. Our story is Leigha has the 5th digit shortening in middle bone of the pinky finger and the bicoronal craniosynostosis. She has a long history of this condition in her family(no one told us anything until after her long ordeal of trying to get a diagnosis.) Blood work did not detect any mutations on any of the known genes associated with craniosynostosis but the genetist diagnosed Leigha with Muenke's anyways. She is now postop by 8 yrs and has no hearing or learning delays has normal growth in her midface and has not had further surgeries other than her initial one. Her family background is a father who genetist think had a mild case of bicoronal cranio, a great aunt(Linda) and Linda's son...Linda was uncorrected and her son was initially diagnosed with Crouzons 25 yrs ago but that is dismissed now because they only have the cranio and no gene mutation. Her Great Grandma thought her son Carl might have had the condition along with Linda but Carl died as an infant. He never ate right, was very fussy and had the same look to his head that Leigha did but 50 some yrs ago not much was done or known. Also Her Great - Great Grandmother had a son die as an infant after we had talked to her about all we learned she too suspected he had the same thing. Linda who went uncorrected had no known learning delays, nor hearing loss, just migrains from time to time growing up(I imagine as she went through puberty and her skull continued to grow that it caused a bit of pain.)She had 5 children one had cranio..she's had several grandchildren and I don't think they have any cranio yet(they are the ex's family and he walked out years ago so know little now)Nathan had ADHD and dropped out of school but I doubt that was cranio related they weren't the type of family to push people to complete school...ect(see above that they didn't discuss the cranio until after Leigha's surgery and I started asking questions.)
I don't know how long the Muenke's will hold up without the genetic marker found but its what the genetist say she has due to 3 signs...familial history, cranio, and the shortened bone in her pinky
Hope that helps
Mel

[maz]

Thanks mel that has been a great help.and you are right I can not find out much about Muenke and our genetic doc only had books to show us what she found with a few pictures.But I havent given up yet I will search some more!!!

[Lisa]

Muenke has just been "discovered" within the last 10 years. Unfortunately there isn't a LOT of information about it unlike other syndromes. I have only found two good articles myself, the truth is they really don't know a lot about it. I have really thought nothing about it since I was diagnosed myself, it hasn't affected me in my 34 years of life, so my outlook for my son is very optomistic.

[meggie]

Those of you wanting information about Muenke Syndrome might find useful a pdf file on the Headlines - Craniofacial Support website. Go to www.headlines.org.uk (http://www.headlines.org.uk) go to their resources and then Headlines Leaflets - there is a leaflet on Muenke in pdf format on the list - it does give quite a lot of useful information about the syndrome

Hope you find this helpful

[etar]

Hi, My son has Muenkes, he had surgery for right coronal cranio last year, his hearing has been tested and so far so good, we were told there was the potential for ICP after surgery so his optician checks for this at his 3 monthly check ups, he has a very pronounced squint in his left eye which will probably require surgery to correct and we were told that there was a higher chance of him needing further surgeries, and so far it looks like he will probably need further surgeries to correct head shape, but we are literally taking it month by month on that one as his head shape changes a lot.
We were told that if he had to have a syndrome this was a better one to have, we have both been tested and don't have it, so it seems he is the start. There is also the potential for learning delays, but so far he is meeting all milestones and targets, he is a mad chatterbox and flirt, he loves the ladies (he's only 2, I do believe we will have our hands full in a few years t.g.)