Medical and surgical care for children with down syndrome: a guide for parents.
Children with Down syndrome may have a variety of ear, nose and throat (ENT) problems. Many of these problems are easily detected and may worry parents, but they typically correct themselves as children grow older. These conditions include sinus drainage, drooling, mild blockage of the nasal airways and tongue protrusion.
Other conditions may be less apparent and commonly go unnoticed by the family. Unfortunately, these problems are often more serious. They may include hearing loss and more serious blockage of the nasal airways. When any of these conditions are detected, they should be promptly treated.
Though the above list may seem long, not all children with Down syndrome will have these conditions. If your child has one of these conditions, talk with your primary health care provider such as a nurse practitioner, pediatrician or family practitioner. They can refer you to an ENT physician if necessary. For typical ear, nose, and throat conditions, treatment for children with Down syndrome is the same as for other children. However, some circumstances that call for special considerations do exist...
Sinuses are the small cavities in the cranial bone located behind the nose. They serve as air passages that open off the main nasal airway. They act like a sounding board and affect the quality of speech greatly. When sinuses become filled with fluid, as they do when there is an infection, the quality of speech changes.
Because of the relatively small size of the nasal cavities in children with Down syndrome, sinusitis (sinus infection or inflammation) is common. So, too, is drainage from the nose (runny nose), because nasal drainage is often due to infection or inflammation of the sinuses. Eight out of 10 children with Down syndrome have persistent nasal drainage. Although most children have runny noses occasionally, children with Down syndrome can have this problem much more frequently and for longer periods of time. For most children with Down syndrome, the problem decreases as they reach adulthood.
If nasal drainage is thick and yellow-green in color, this suggests a possible bacterial infection. Initial treatment may be with antibiotics. If the drainage starts up again soon after you stop giving your child antibiotics, your primary health care provider may prescribe a low-dose antibiotic to be given over a long period of time (months to years) to prevent a return of the infection. The side effects are usually minimal; however, in some children, the antibiotic can alter the bacteria that live in the GI system and result in diarrhea, allergic reactions and failure to kill the targeted bacteria.
Sometimes it is suggested that modifying your child's diet can reduce sinus infections, but there has been no scientific evidence that this works. Some allergists prescribe nutritional modifications for children who have shown an allergy to some specific food and who have persistent sinus infections.
If your child's drainage is clear, your child may have allergies. In this case, your doctor may prescribe antihistamines or decongestants. In a formal survey, six of 10 patients with Down syndrome obtained relief from drainage and other allergy symptoms when they used antihistamines or decongestants. However, those medicines make some children sleepy. In other children, they may cause increased activity. These symptoms usually go away in about two weeks. There are no studies showing that children with Down syndrome are more prone to allergies than other children.
If your doctor suspects that your child has a serious sinus infection of inflammation, he or she will usually ask for x-rays of the sinuses. In some cases the doctor may order a CT scan of the sinuses. A CT (computerized tomography) scan is a special x-ray test that gives a clearer view of the sinuses and can be helpful in making a decision about whether or not surgery is needed.
As a last resort, surgery to promote sinus drainage is an option. This should only be performed if the drainage is excessive or your child has recurrent sinusitis with fever. The most common sinus surgery involves placing a drainage hole or "window" in the sinus located in the upper jaw (maxilla). This surgery is done under general anesthesia. Mere extensive sinus surgery is only done as a last resort in children under the age of eight... In these young children, the sinus cavities are small, the operation is technically more difficult, and results are often unpredictable.
When I walked into Barb Vallejo's high school classroom last spring, I couldn't tell who had an IEP and who did not. I hesitated a little and wondered how will I identify those young people who most capture my interest and imagination: adolescents with chronic illness or disability. Vallejo's students made it easy.
One young man talked about his learning disability. "You know, when I started junior high, I began having real problems. I would do the math homework but couldn't find the paper. Or I couldn't remember if I completed the assignment at all. I'd confuse one class with another." This glib, attractive high school junior could articulate his frustration. When the semester ended and he would clean his locker, he'd find all the work he'd thought he'd lost. The situation only got worse and, by high school, he was way behind his peers, feeling dumb' and hating school.
Today he can explain his disability to his teachers. He can tell them what accommodations he needs. "You see, each day we list out each class on this paper. The teacher writes out the assignment I have to do in class or at home. And then we organize the work." At the end of the day, Vallejo or a colleague helps him sort through the books and papers and organizes again. This self-advocate will succeed because he understands his needs and can ask for help.
Each time I meet a young person with a disability who is enthusiastic about life and feeling in control, I am certain someone has taken the time to help that youth to become a self-advocate. As parents, as teachers, as doctors and providers, our goal should be helping to build the capacity of youth with disabilities to speak out for themselves.
The story, "Speak Out: Students Learn (and Teach) Self-advocacy," shows how one group of students learned these skills and applied them to their everyday lives. We've also provided a summary of some of the presentations made at the Great Lakes Society for Adolescent Medicine. They provide some innovative suggestions and guidance to making a difference in your community and state. Finally, Liz Latts, Information Specialist and Director of the Resource Library, has identified two projects on self-advocacy that she finds particularly interesting.
For more information on self-advocacy, or for information on how to get a copy of the videotape, "Self Advocacy: Taking Charge," contact:
Transition Plus Services 807 N.E. Broadway Minneapolis, MN 55413 (612) 627-2141
Minnesota Transitions Systems Improvement Initiative Interagency Office on Transition Services 657 Capitol Square Building 550 Cedar St. St. Paul, MN 55101
The National Center for Youth with Disabilities is a program of The Society for Adolescent Medicine and the Adolescent Health Programs at the University of Minnesota. Publication of Connections is supported, in part, by project MCJ-275045 from the Maternal & Child Health Bureau (Title V, Social Security Act), Health Resources & Services Administration, Department of Health & Human Services.
NCYD's mission is to improve the health and social functioning of youth with disabilities through providing technical assistance and consultation, disseminating information and increasing the coordination of services between the health care system and others. Center activities are directed at enabling youth to become full participants in their communities.
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|Publication:||The Exceptional Parent|
|Date:||Nov 1, 1995|
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