I mentioned this group in several of my posts. Here is a link to the last newsletter which came out in March. It's focus was on the microduplication. Hope this helps! Stephanie http://groups. yahoo.com/ group/c22cnews/ files/C22C% 20Newsletters/ issue%2045% 2C%20March% 202010.pdf

Hello Stephanie, I share in your fears.Our son Alex is 3 years old and has had 8 surgeries as well. He was born with a cleft lip/palate, hearing loss in left ear, dysphagia, asthma, sensory processing disorder, low toned, articulation disorder, expressive language disorder, born with a VSD, sees a neurologist for behavior issues, sees a developmental pediatrician for cognitive issues, sees a ent for velopharyngeal insufficiency, still has feeding difficulties, nasal regurgitation, central sleep apnea, 5th finger clinodactyly, webbed eyes and the list goes on. We have researched this syndrome (there really isn't any literature on this syndrome) and have found the Mayo Clinic in Minnesota, Dr. Noralane Lindor in Genetics. We have sent all of his medical records, blood tests and xrays to them and they are formulating an appointment for Alex to see all of their specialists and come up with a treatment plan. The doctors in AZ are very reluctant to order MRI's and additional tests since they are unfamiliar with 22q11.2 Microduplication Syndrome.... We have often said we are not comfortable with Alex becoming a lab mouse, however we want others diagnosed to have more information than we do... I wish your family the best... The Salinas Family

Thank you for your thoughts. It is a very difficult balance between doing what is right for your child and to being used as part of an experiment. I have hopes that although they cannot treat his condition, they might be able to treat some of the symptoms and make his and our lives more bearable. That is one of the reasons I trudge on. Currently hope to treat his sleeping issues and perhaps repair his ear. After our last treatment with 3 sets of antibiotics I no longer question if I should continue to fight infections or fix the ear. Antibiotics screw up his entire system. They make him hostile, angry and even more impulsive. Life like that cannot continue so we go back to fighting. Good luck to your family at Mayo. I hope that they can help. If I decide to go that route I might try Duke or CHOP. I am just not there yet. Stephanie