Newborn with OAVS syndrome/Goldenhar

Does anyone have any experience with this syndrome.  It is like a minor Goldenhar issue.
~sass~

[margypops]

Is it called Goldenhar ?

[margypops]

I think what you are meaning is a congenital birth condition associated with abnormalities of the head and the bones of the spinal column,it is fairly rare and can cause deafness ,here is a link    worldcf.org/.../craniofacial_resources/goldenhar_syndrome-

[SassySharon]

It is a from of Goldenhar..OAVS stands for oculo-auriculo-vertebral spectrum .
I am hoping to find someone that has dealings with it for discussion.
Thanks for the link!  
sass

[margypops]

you are welcome, I am wondering if you also put it into the search engine and add a support group wanted .

[SassySharon]

good idea!

[margypops]

Found one its online   ***@****   thats the e-mail address the website is   http://www.goldenharsyndrome.org

[margypops]

Gosh there are a lot of them up there ... put it into google I found lots .good luck, how is your child doing .

[SassySharon]

i have tried several and feel like I am on a wild goose chase.  tells me to go to another address and then sends me right back to the same one!  ha....if you find one maybe you could send me the address in a private message..the address you sent me was blanked out on my end!

[SassySharon]

oh yea, Goldenhar is the worst end of these disorders.  The OAVS is not as severe.

[margypops]

okay I will look tomorrow

[Caralea]

I have a daughter that they believe they will diagnose with OAVS.. it hasnt been confirmed, but they are going to take another blood draw, CT scans, advances hearing tests (she is still considered deaf in the right ear, and partially in the left), and spinal x-rays.

get a hold of me when you can! =)

[SassySharon]

Thanks for letting me know about your daughter.  OAVS is a very rare condition and is hard to find anyone to talk to about it.  How old is your daughter?  When will you know?

[margypops]

I am glad you have found some else to share and talk to ,I had a look on the internet but you are right there isn't much up there ..good Luck  

[jordichch]

hi there, i am sooo happy to have finally found exactly what i was looking for! thank goodness there are others to share and ask advice from, we have a 15 month old princess who is yet to be fully diagnosed!

[margypops]

That is indeed good news , I hope you managed to connect up with the others who posted here .

[jordichch]

i am trying but am a bit lost, found an amzing girl from the uk on facebook!