Hello

[Cejow]

You're kidding me....He has Ring Chromosome 18?!?!?! You really came to the right place! Are you a member of the Chormosome 18 Research and Registry Society? (http://www. chromosome18.org) Do we know each other in real life or through a listserv? I actually have 18q- myself! Although my hearing problems are the result of the atresia..(no ear canals...so purely a bone conductive issue) What about an auditory brainstem implant? Have you taken him to a major pediatric ENT center?

That's unusual.... Many Deaf schools specialize in multiply handicapped kids....even advertise on their sites that they serve the multiply handicapped.Have you asked the Deaf school for other resources? Oh, and I would STRONGLY,STRONGLY suggest that you join the Registry...also try and get your son tested for growth hormone defincency....The Registry can tell you a lot more then I can!

He is on the Registry for the 18 chromosome registry and research. Wow 18q-!!! Small world. As for the growth horomone defiency yes he has it. He is 7 and is about the size of a 2 year old. We decided not to do anything about it. His geneticist talked to the research group and they went through some things and told us it wouldn't be the best thing for Silas.
Silas didn't have ear canals either and used the bone conductor for awhile. Then they quit working. ENT at Milwaukee said quit using them and didn't do much after that. It wasn't until we got back here to Florida and we saw Silas's ENT at Nemours, when the doctor said something else wasn't right and he did the CT and MRI and there was a massive infection. They called in the Mayo Clinic and talked things over with the ENT there and then there was a big meeting with all Silas's doctors that they decided what they had to do was remove everything and after lab results came back they think close to 2 years he was fighting the infection. They even had to bring in a neurosurgeon in to scrape his skull because the infection was eating his skull. BIG MESS. The infection was so bad after they removed his Tonsils and adenoids one of the nurses hit the bucket puking. Because the doc had to pick him up by the feet and hang him upside down and fllushed everything because pus was going everywhere. OK now that I ruined everyone's appetite.

Right now I am trying to get an ASL Teacher in Silas's school right now. I think the reason they won't take him at the deaf school is Silas has a lot of medical problems, multiple disabilities and he woudl have to stay at the school monday-friday.