General: Currently, there is no cure for Down syndrome. However, many treatments and therapies may help patients cope with the disorder. With proper therapy, some patients are able to live independently once they become adults, while others may need lifelong support and/or residential care. Adults with profound intellectual disabilities usually require lifelong nursing care.
Down syndrome patients typically visit several doctors, including a gastroenterologist, cardiologist, developmental pediatrician, and other specialists to monitor their conditions and treat complications of Down syndrome throughout life.
Occupational therapy: Patients may benefit from occupational therapy. During sessions, a therapist helps the child learn skills to help him/her perform basic daily tasks, such as feeding, dressing, and communicating with others. Some patients work with therapists who specialize in disorders and disabilities, including Down syndrome. Parents and caregivers can ask their children's pediatricians for recommended therapists.
Education: Patients with Down syndrome must have access to education that is tailored to their specific strengths and weaknesses. According to the Individuals with Disabilities Education Act, all children with disabilities, including Down syndrome, must receive free and appropriate education. According to the law, members of the patient's school should consult with the patient's parents or caregivers to design and write an individualized education plan. Once all parties agree with the plan, the educational program should be started. The school faculty should document the child's progress in order to ensure that the child's needs are being met.
Educational programs vary among patients. In general, most experts believe that children with disabilities, including Down syndrome, should be educated alongside their non-disabled peers. The idea is that non-disabled students will help the patient learn appropriate behavioral, social, and language skills. Therefore, some Down syndrome patients are educated in mainstream classrooms. Other Down syndrome patients attend public schools but take special education classes. Others attend specialized schools that are designed to teach children with disabilities.
Early intervention programs: Patients with Down syndrome usually meet traditional developmental milestones. However, it typically takes them longer than most children to develop these skills. For instance, it may take a child with Down syndrome twice as long to crawl or walk than a healthy child. Therefore, caregivers should ask the doctors of Down syndrome patients about early intervention programs. These specialized programs expose Down syndrome children to appropriate sensory, motor, and cognitive activities. These programs typically involve special educators and therapists who help babies and young children develop their language, social, motor, and self-help skills.
Behavioral therapy: Behavioral therapy may also be beneficial. Several different types of behavioral therapy are available to help Down syndrome patients improve their communication and social skills, as well as their learning abilities and adaptive behaviors. Evidence suggests that behavioral therapy is most effective if it is started early in life, when the patient is three to four years old or younger.
Physical therapy: Physical therapy may help patients improve their physical strength and motor coordination. For example, since babies with Down syndrome usually have muscle tone, a physical therapist may be able to help babies learn how to roll over, sit up, and walk. A variety of techniques, including exercises, stretches, traction, electrical stimulation, and massage, are used during physical therapy sessions.
Speech-language therapy: Some patients with Down syndrome may benefit from speech-language therapy because individuals often develop communication skills slower than normal. During speech-language therapy, a qualified speech-language professional (SLP) works with the patient on a one-to-one basis, in a small group, or directly in a classroom, to help the patient improve speech, language, and communication skills. Programs are tailored to the patient's individual needs.
Speech pathologists use a variety of exercises to improve the patient's communication skills. Exercises typically start off simple and become more complex as therapy continues. For instance, the therapist may ask the patient to name objects, tell stories, or explain the purpose of an object.
On average, patients receive five or more hours of therapy per week for three months to several years. Doctors typically recommend that treatment is started early to ensure the best possible prognosis for the child.
tips for caregivers
Caregivers should find a team of trusted healthcare professionals. Patients with Down syndrome typically visit several specialized healthcare providers and professionals in order to properly treat and prevent complications associated with the disorder.
Caregivers may find support from other families who are caring for a patient with Down syndrome. Many communities have local support groups for parents, family members, and caregivers of patients.
Caregivers should educate themselves about Down syndrome. The more a caregiver knows about the condition, the better he/she can help the patient. Being educated on the disorder may also help the caregiver learn how to communicate better with the patient.
Parents of children with Down syndrome should stay in close contact with their children's teachers. This helps ensure that the child is receiving appropriate education that is tailored to his/her specific needs. Parents are also encouraged to find out how they can support their children's learning needs at home.
Good scientific evidence
Zinc: Zinc formulations have been used since ancient Egyptian times to treat a variety of medical conditions. In several studies, zinc supplements seemed to counteract underactive thyroids (a condition called hypothyroidism) and slightly reduce the number of infections in children with Down syndrome. However, zinc did not seem to improve weak immune systems. Additional human research is needed before a firm conclusion can be made.
Zinc is generally considered safe when taken at the recommended dosages. Avoid zinc chloride because studies have not evaluated its safety or effectiveness. While zinc appears safe during pregnancy in amounts lower than the established upper intake level, caution should be used because studies cannot rule out the possibility of harm to the fetus.
Unclear or conflicting scientific evidence
5-HTP: 5-HTP is the precursor for serotonin. Serotonin is the brain chemical associated with sleep, mood, movement, feeding, and nervousness. Studies have evaluated the effects of 5-HTP on motor, social, intellectual, and language development in children with Down syndrome. However, these are early studies that have provided unclear results. Additional research is needed to make a firm conclusion in this area.
5-HTP should be avoided in infants with Down syndrome because there is a risk of seizures. Avoid if allergic to 5-HTP. Avoid with eosinophilia or mitochondrial encephalomyopathy. Avoid if taking monoamine oxidase inhibitors (MAOIs). Use cautiously with gastrointestinal disorders. Use cautiously with kidney disorders. Use cautiously if taking antidepressants (including tricyclic antidepressants, selective serotonin reuptake inhibitors, nefazodone, trazodone, venlafaxine, mirtazapine, or bupropion), 5-HTP receptor agonists, carbidopa, phenobarbital, pindolol, reserpine, tramadol, or zolpidem. Avoid if pregnant or breastfeeding.
Physical therapy: The goal of physical therapy is to improve mobility, restore function, reduce pain, and prevent further injury. A variety of techniques, including exercises, stretches, traction, electrical stimulation, and massage, are used during physical therapy sessions. Based on early study, orofacial physical therapy may be beneficial in treating oral motor function, facial expression, the occurrence of malocclusions (misalignment of the teeth), and enlarged tonsils in Down syndrome children. In addition to physical therapy, treadmills have also been used to help reduce the delay in walking onset in infants. Sensory integrative therapy, vestibular stimulation (stimulation of the body's balance system), and neurodevelopmental therapy are other techniques studied. Due to the various methods studied across trials, comparison is difficult and a firm conclusion cannot be reached at this time.
Not all physical therapy programs are suited for everyone, and patients should discuss their medical history with their qualified healthcare professionals before beginning any treatments. Based on the available literature, physical therapy appears generally safe when practiced by a qualified physical therapist. However, physical therapy may aggravate some pre-existing conditions. Persistent pain and fractures of unknown origin have been reported. Physical therapy may increase the duration of pain or cause limitation of motion. Pain and anxiety may occur during the rehabilitation of patients with burns. Both morning stiffness and bone erosion have been reported in the physical therapy literature, although causality is unclear. Erectile dysfunction has also been reported. All therapies during pregnancy and breastfeeding should be discussed with a licensed obstetrician/gynecologist before initiation.
Traditional or theoretical uses that lack sufficient evidence
Taurine: Taurine, or 2-aminoethanesulfonic acid, was originally discovered in ox (Bos taurus) bile and was named after taurus, or bull. In the diet, taurine is considered to be a non-essential amino acid, although it is not a true amino acid. Taurine is found in high abundance in the tissues of many animals, especially sea animals, and in much lower concentrations in plants, fungi, and some bacteria. It has been suggested, but not proved, that taurine may help treat symptoms of Down syndrome. However, until studies have been performed in this area, it remains unknown exactly what effects taurine may have on the condition.
Taurine is an amino acid-like compound, and it is unlikely that there are allergies related to this constituent. However, allergies may occur from multi-ingredient products that contain taurine. Use cautiously with increased levels of very low-density lipoprotein (VLDL) cholesterol, high triglycerides, potential for mania, or with a history of low blood pressure, bleeding disorders, or epilepsy. Use cautiously if taking lipid-lowering medications, blood pressure-lowering agents, drugs that affect blood sugar, or blood-thinners (anticoagulants or anti-platelet agents). Do not consume with energy drinks containing taurine, caffeine, glucuronolactone, or B vitamins. Do not consume taurine before drinking alcohol or exercising. Use cautiously if pregnant or breastfeeding; taurine is a natural component of breast milk.
There is currently no known method of prevention of Down syndrome. However, individuals who are at high risk of having a baby with Down syndrome may undergo genetic testing to determine if they are carriers of translocated chromosome 21. Prenatal screening and diagnostic tests may also be performed to determine if a mother's fetus has Down syndrome.
Genetic counselors can help patients understand the risks of having a child with Down syndrome. He/she can also explain the different types of genetic tests, including their potential risks and benefits. Genetic counselors can also help patients understand the results of their tests.
Patients diagnosed with Down syndrome should undergo regular checkups with their doctors, including their cardiologists, gastroenterologists, and primary care physicians. This helps reduce the risk of developing complications.