Opitz G/BBB Syndrome..assoc with cleft lip/palate?

Tina - posted on 01/17/2009 ( 2 moms have responded )

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Hi I'm new on here.. My son is 7 yrs old and has had 5 surg with another planned this yr (2nd bone graph from hip to cleft). Recently we saw a genetic councelor because he was also diagnosed with autism, adhd, asthma, and reflux -has wide space between eyes and flat bridge of nose(all within 5 yrs and since prev genetic testing). They are doing more up to date testing because they think he has Opitz G/BBB syndrom. A genetic condition that effects the midline structures alonge the body that could poss be the root of why he was born with cleft lip/palate. Conditions that are also results of this is as above.. behavior issues, breathing prob, heart prob, genital prob, and more in boys. Has anyone else had this diagnosis along with the cleft lip/palate? He is very self con. Kids can be so mean and harsh i feel so bad for him when people pick on him. I want to just wrap him up and keep him under my wing. HOW DO YOU DEAL WITH ALL OF THIS AND HELP YOUR CHILD AS WELL??

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View replies by

Gill - posted on 04/02/2009

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Hi, my son was born with a cleft lip and palate and has had 3 operations, with the bone graft to come in a few years.  I remember him being checked over and the gap between his eyes measured, fortunately for us he seems fine.  As regards dealing with other kids, Kieran has developed his own way with this - he tells everyone about his cleft, his operation and the hole in his mouth - whenever a child asks him what he is saying or says they can't understand his speech - he tells them that is because he has a hole in his mouth and they don't - he is really proud of himself.  I know he is going to get bullied at some point but hopefully this attitude of this is who I am will stand him some way to make it easier to deal with.  We go to Alder Hey in Liverpool and they have a psychiatrist dedicated to the cleft unit who will talk to any kids who are concerned about anything - very low key, not like an assessment.  There are some books you can get called Changing Faces which are like cartoons and explain to a child things they might say if they are bullied about being different.

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hello my little boy was bourn with wide spaced eyes hypospdieas a lyngencal cleft loe set ears a hair lip and a toung tie he just turned 1 on the 10th of march and there is no testing in australia we go back to genetics soon just waiting for appointment he has had 2 surgurys and fingers crossed he will need no more he has had development delays

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