At what age should my child, with Treacher Collins syndrome, consult with a craniofacial surgeon/team?

What is distraction osteogenesis?

Our daughter is diagnosed with a Lymphatic malformation, it is under her eye and beside her nose, the Doctor we saw said it may be a venus malformation, but he said he woudlnt know until they take it out. We have surgery shceduled for August, we were wondering what information we might find concerning these malfoamtions, and their removal.

I have a 11month old twin and one of them has goldenhar syndrome and vsd and some other heart problem had one surgery in Boston last agust and will have anouther in end of the year could you tell me where can I find information about all the cranifacial team in USA and do you know of the team in Boston and if they have a e-mail address? Are there any picture gallery that I can see before and after like jaw surgery? Where should a mother go for support if her child has Pfeiffer Syndrome she has been having bad time finding it and need help can you help her?

My son has a cleft palate and a small lower jaw/chin. My doctor says it is not Pierre Robin syndrome and that his jaw should "come out" very quickly and grow into his face. He is 6 months old right now and isn't going to have repairs done until 10-12 months of age. I was wondering if I should expect his jaw to develop normally, how long it may take, and if there is anything I can do to help him recover faster or better.

I am a physical therapist. I was just given a home care case with a 15 month old boy with a diagnosis of torticollis (right sternocliedomastoid is tight). He has mild assymetries in the shape of his face, and the left side of the back of his skull is very flat. He has a three month old brother who I decided to check over. The 3 month old has increased tone in his upper extremities, and tilts his head to the right when supported in an upright position. But, his skull, and face shape looks fine, so far. I recommended that the mom get him physical therapy services also. I have treated other children with torticollis. But, the 15 month old's bone structure has been affected more severly than I have usually seen. I have two questions. First, is there anything that should be done for the 15 month old by an orthopedist. The second question is, considering the history of the 15 month old child's tendency for skull and facial deformity, should I recommend that the parents have the three month old followed by an orthopedist that specializes in skull and facial deformity, in case he begins to develop the same problem, so it can be caught early, and treated?

My daughter was just diagnosed with hemifacial microsomia. Where do I turn and what do I do now? My daughter is 2 years old and was born with a heart defect (VSD) could these two be related? I would appreciate any and all info you could give me.

I am 25 weeks pregnant and learned my daughter has a unilateral cleft lip and possible palate. I have been researching several teams and the time limits for the initial repair have all been different. I would like to know what the difference is in waiting. There is a surgeon in Virginia who does the surgery after birth and the majority of other surgeons tell me at 10 weeks. Is there any reason why we should wait?

My daughter is 2 yrs old and has a mild case of TCS. The main surgury she would need is on her underdeveloped cheekbones. I wondered what was your opinion about the ideal age to do this, or what age is the youngest possible to do this. Is one operation enough for underdeveloped cheekbones or are a few operations required?

I am a Speech-Language Pathologist and am working with a four year old boy who had surgical intervention for craniosynotosis at age 10 mo. I'm not sure if it was the single suture type problem or multiple—the child has some notable oral-motor weakness of lips and cheeks and associated mild speech problems. Fine motor problems with hands are also an issue. Are these clinical symptoms likely related to the cranial problem or are they likely unrelated? This is the second child I've seen this fall with a history of craniosynostosis—both have speech problems. This is a new diagnosis to me.

Is there a craniofacial abnormality/syndrome that results in a child having an "elfish" look to the face? Child has dysmorphology of ears - they look different from one another but are both low set and very prominent. Jaw is Pierre Robin type. Developmental picture is of child with delays in speech, cognitive and motor skills, recurrent middle ear problems. Child also seems to have velopharyngeal weakness - with associated hypernasal voice.

Which method of jaw distraction would you recommend for a 2.5 year old child with TCS and a Tracheostomy. 1) Use of the Internal device to distract the jaw in one direction. 2) Use of an External bi-directional device to distract the jaw. I think with option 1) an orthodontist may then attempt to move the lower jaw closer to the top jaw.

Our 2.5 year old has TCS and severe coanial atresia. The bone blockage appears to go all the way to the base of the brain. How successful is an operation via the palet to remove the bone and create an airway. What complications may arise if any other than the opening closing over? Yes this is the same boy about to have one of two types of jaw distraction.

I am writing on behalf of some friends, who live in the UK, who have a 6-year-old daughter with TCS (and a tracheostomy tube). When their daughter was 4 weeks old, their plastic surgeon split her soft palate in an attempt to improve her airway (and prevent a tracheostomy). This procedure was unsuccessful, and the operation was reversed eight months later. They have asked that I contact you to inquire as to how this procedure could have had an impact on the speech difficulties that she is having today. They would also like to know what function the uvula serves (regarding gag reflex, speech, etc), since their daughter's uvula is absent.

Our son has Goldenhar Syndrom. He is 11 weeks old right now. Do you recommend any surgeons for his craniofacial problems here in Florida? We have contacted the World Craniofacial Foundation and found doctors in Dallas, Texas. But one with experience in Florida would be much closer to home.

I am a graduate of all the craniofacial operations. I'm 37 and was born with a bilateral clef lip & palate. My operations were completed when I was 16. I'm writing a screenplay about this time and what it was like. My question is can you give me the medical terms/names for these operations I had during this time: the first was where they broke the bones in my nose to bring them closer together, the second was an operation where they tightened up the nostrils on to my lip, and the final one was a three stage operation where they removed my upper lip scar tissue and replaced it with a part of my bottom lip. The last one was the most fun (sarcastically speaking)!

Our 4 year old daughter (born December 25th) has TCS. She has a trach since she was 2 months old. Her cleft palate has been closed in 2 sessions, the last repair was when she was 2 1/2 years old. She had an external distraction when she was almost 2 years old, which has not been as succesfull as hoped, for when her tonsils were removed at the age of 3, it was obvious that her trach could not yet been removed. Her tongue still closes off most her throat. She can eat and drink anything she wants without having problems. Her speech is rather good. My question is this: do you have suggestions for us how to get rid of the trach? Just to give us an idea what we can expect when we visit the doctors about this. My hope is, that you might have a fresh view from the distance for we live in the Netherlands.

I am 19 years old and I live in Leavenworth, KS. I am having some problems with my cleft palate. It almost seems as if the hole in the roof in my mouth has re-opened. I was seeing Dr. Green for awhile and we were going to go ahead and have the surgery done. But, I'm not able to do that at this point and time. I am having extreme problems eating and drinking, everything comes back up through my nose. Is there anything that can be done or is there anyone who supports this kind of thing?