Robin,
I would probably go to the Cincinnati clinic, if I were looking for the closest clinic. I take Ethan to the DS clinic at U of M every year, but I do it to support the growth and development of the clinic, not because anything earth shattering happens when I am there. Dr. Hornyak (who runs the DS clinic) is an excellent doctor, and an all around nice guy who also has a son with DS (he's probably about 13 now). I do think it is an excellent resource for new parents, though!
The clinic in Cincinnati is newer, but is supposed to offer virtually everything you might need. This was the press release:
May 1, 2002 - Comprehensive Center for Down Syndrome
CINCINNATI -- Cincinnati Children's Hospital Medical Center today opened The Jane and Richard Thomas Center for Down Syndrome. The Center's services will include evaluation, treatment, research, and education making it perhaps the most comprehensive Down syndrome center in the nation.
The Center is named for Jane and Richard Thomas whose granddaughter, Emily Ann Hayes, was born in January 1995 with Down syndrome. Emily and her parents, Sally and Gary Hayes, have received services through the Down syndrome clinic since Emily was born.
"The goal of the Center is to provide the full continuum of care, including medical / developmental evaluations, comprehensive follow-up treatment, and clinical research to patients with Down syndrome and their families, eliminating the need to obtain services at multiple sites," says Bonnie Patterson, MD, program director of the Center. "A comprehensive center that includes clinical research under one roof can help children with Down syndrome have fuller, more productive lives."
The center, part of the Division of Developmental Disabilities at Cincinnati Children's, includes three major components:
The Down Syndrome Clinic: Established in 1985, the clinic offers complete medical / developmental assessments by experts in pediatrics, speech / language pathology, nursing, social work, nutrition, psychology and special education. The evaluations provide information on monitoring healthcare, current levels of functioning, and recommendations for new or continued intervention.
The Down Syndrome Treatment Center: This new center provides consultation and direct intervention in the areas of speech / language development, behavior management, nutrition, and educational placement. The staff works not only with children and their families but also with community professionals and agencies to create personalized treatment plans that maximize the potential of all individuals with Down syndrome. In-home services help with such issues as toileting, feeding problems, and sleep concerns. In addition, the Center, in collaboration with the Down Syndrome Association of Greater Cincinnati, educates parents, teachers, health care professionals, and the community about Down syndrome.
Clinical Research: Jane and Richard Thomas established the Emily Ann Hayes Research Fund in 1996 to stimulate and support clinically relevant research involving children with Down syndrome. Today, Cincinnati Children's staff from such disciplines as developmental pediatrics, speech / language pathology, psychology, otolaryngology, audiology, gastroenterology, neurology, pulmonary medicine, and radiology conduct this research.
Down syndrome is the most common chromosomal abnormality associated with mental retardation. One of every 800 to 1,000 births -- about 5,000 a year -- is a child with Down syndrome. Down syndrome affects more than 350,000 people in the United States. The full potential of children with Down syndrome remains unknown, but researchers are learning more, including some at Cincinnati Children's.
For example, Sally Shott, MD, a physician in the Division of Otolaryngology, is in the third year of a five-year grant from the Emily Ann Hayes Research Fund. Dr. Shott is studying ear, sinus, and airway problems in children with Down syndrome to determine best treatment options and provide the best and most appropriate care for children with Down syndrome, many of whom develop chronic ear disease and hearing loss. Dr. Shott's research indicates a significant decrease in the incidence of hearing loss when aggressive treatment is given."
The downside to that clinic is that I don't see any developmental psychs listed who have expertise in developmental disabilities, but maybe they have one. Dr. Capone really is the guru and if I were dealing with significant behavioral issues with Ethan I wouldn't hesitate to make an appointment with him.
Ethan's major issues are still sensory = oral-motor and his self-stim behaviors. We have had great results working on this with Sara Rosenfeld-Johnson and her associate Lori Overland. We just started making arrangements to take him to CONNECTICUT for almost a week this summer for him to get some intensive intervention. Two hour sessions a couple of times a year are not cutting it for him. Don't ask me how we're going to pay for it, cuz I'm sure my insurance company isn't going to touch it, but we'll figure it out!
It just seems to me that when you have an issue that is dominating your life you need to seek out the absolute best person you can find or have heard of, KWIM? And in this case it would probably be Dr. Capone.
Robin, I also PM'd you with a question
? And no, U of M does not have any one knowledgable in DS that is a psychologist. Remind me once again why I live in Michigan?
? And no, U of M does not have any one knowledgable in DS that is a psychologist. Remind me once again why I live in Michigan?
jackie