The development of children with Down syndrome proceeds in a series of stops and starts. Stops are when children do not appear to be learning any new skills.
These lulls in development are very important – they indicate that the child is consolidating what they have learned by practising their new skill, and it is a time when they are beginning to develop the components for their next skill.
The milestones that children reach are the tip of the iceberg with far more development taking place, unseen below the surface. Many children benefit from early intervention, the term used to cover the physiotherapy, occupational therapy, speech and language therapy and special educational help given to pre-school aged children. These professionals work with the child and parents, devising programs that are followed in the home.
Any areas where the child is having specific difficulties are targeted to prevent possible delays with future development. Nowadays, most children with Down syndrome attend mother and toddler groups, nursery, play groups and other clubs alongside their peers. These activities have many benefits; the child will develop coordination and strong muscles as well as learning good social skills and communication, and become more independent from their parents.
Most importantly, the children are taking their place within their community. More and more children with Down syndrome are attending mainstream schools and participating in programming along with their peers.
With the correct type and level of support, academic skills are developed.
- Review parental concerns
- Current level of functioning
- Review current programming (early intervention, preschool, school)
- Ear problems
- Sleep problems (snoring or restless sleep might indicate obstructive sleep apnea)
- Assess for signs of hearing loss
- Thyroid function tests
- Review ophthalmologic and dental care
- Monitor for behavior problems
- Review signs and symptoms of obstructive sleep apnea (Snoring, apnea, restless sleep)
- Review any symptoms of joint disease- OA, JA , gouty arthritis( increased uric acid)- these are more common in individuals with Down syndrome
- General pediatric and neurological exam
o Including evaluation for signs of spinal cord compression: deep tendon reflexes, gait, Babinski sign.
o Include a brief vulvar exam for girls.
- Use Down syndrome growth charts, as well as growth charts for typically developing children. Be sure to plot height for weight on the latter chart.
- Be Aware of Celiac prevalence 4-17 %-one time screening of whole population without symptoms (age 3). Screen for symptoms: disordered bowel function tending to diarrhea or new onset constipation, failure to thrive using DS growth charts, abdominal distention, general unhappiness and misery, arthritis, rash suggestive of Dermatitis herpetiformis, type I diabetes, thyroid disease or anemia.
o If Antitransglutaminase positive, IgA pos and signs and symptoms, or immunologically negative with significant symptoms proceed to small intestinal biopsy.
o treat with gluten free diet
Lab and Consults:
- Echocardiogram by a pediatric cardiologist if not done previously;
- Thyroid function test (TSH and T4) yearly;
- Screen as above for Celiac as above at age three (as per NASPGHN guidelines), on subsequent visits screen with any clinical suspicion.
- Behavioral auditory testing every 6 months until 3 years of age, then yearly.
- Continue regular eye exams every year if normal, or more frequently as indicated.** guidelines attached**
- Initial dental evaluation at two years of age with follow-ups every six months. Administer immunizations as per Canadian guidelines.
- Enrollment in appropriate developmental or educational program; complete educational assessment yearly, or Individualized
- Educational Plan (IPP) from age four until the end of formal schooling.
- Evaluation by a speech and language pathologist is strongly recommended to maximize language development and verbal communication.
- An individual with significant communication deficits may be a candidate for an augmented communication device.
- Literacy consultation strongly recommend by age 4-5 years.
- Ensure SLP services are being provided
- Twice daily teeth brushing.
- Total caloric intake should be below recommended daily allowance (RDA) for children of similar height and age.
- Monitor for well-balanced, high fiber diet.
- Regular exercise and recreational programs should be established and encouraged early.
- Continue speech therapy and physical therapy as needed.
- Continue SBE prophylaxis for children with cardiac defects.
- Monitor the family’s need for respite care, supportive counseling and behavior management techniques. Reinforce the importance of good self-care skills (grooming, dressing, and money handling skills).