Home
Log in / Sign Up
    Private Messages   Advanced Search   Rules   New User Guide   FAQ   Advertise   Contact Us  
Forum -> Children's Health
Beckwith Wiedemann
Previous  1  2



Post new topic   Reply to topic View latest: 24h 48h 72h

MagentaYenta




 
 
    
 

Post Thu, Aug 10 2017, 9:26 pm
yogabird wrote:
It can be very hard to network about rare things when limiting yourself further by frum. And even if you do find one person, it'll just be 1 other perspective. The feeling of being in the virtual company of a bunch of moms who know exactly what you are going through emotionally, physically, medically etc is unparalleled. Just my 2 cents.


From the data I just read maybe 300 children are born with this syndrome every year. That really lowers her odds of finding frum parents.
Back to top

siyata dishmaya




 
 
    
 

Post Fri, Aug 11 2017, 6:44 am
Can someone guide me to a group? Nothing normal actually came up in my searching. I contacted one group that looked competent, but they never got back to me.
Back to top

amother
Brown


 

Post Fri, Aug 11 2017, 6:53 am
Most active online support groups are on FB these days. Other support forums are usually very quiet/defunct/have moved over to FB. BTDT. You have to be signed in to see and join them.
Back to top

siyata dishmaya




 
 
    
 

Post Fri, Aug 11 2017, 7:17 am
I hear ya! Thats today's world. If I feel the need, I will discuss with a my rav and maybe join facebook. Thank you!
Back to top

siyata dishmaya




 
 
    
 

Post Sun, Aug 13 2017, 7:23 pm
any updates with anyone who knows someone with beckwith wiedmann
Back to top

amother
Orchid


 

Post Sun, Apr 19 2020, 7:12 pm
Siyata dishmaya- are you still on ima?
did your child need a tongue reduction?
I'm looking for info on surgeons in the US that do partial glossectomy
Back to top

amother
Mauve


 

Post Sun, Apr 19 2020, 8:06 pm
amother [ Orchid ] wrote:
Siyata dishmaya- are you still on ima?
did your child need a tongue reduction?
I'm looking for info on surgeons in the US that do partial glossectomy

I looked into it a number of years ago for a patient. The BWS support group I found recommended Dr. Marsh. I believe the family wss very pleased.
Back to top
Page 2 of 2 Previous  1  2 Recent Topics




Post new topic   Reply to topic    Forum -> Children's Health