A Parent's List for a Child with Down Syndrome

When my daughter was first born, I obsessively compiled basic medical notes about Down Syndrome and have followed them and will continue for much longer. I have since learned about individuality, but it helped control one of my many new fears.

I hope this helps you too.

1. After the diagnoses, get an assessment done at 4 months old and every 6 months after that.
2. Get routine health checks
3. Thyroid blood tests should be done at birth, 6 months, 1 year old and annually after that. This will prevent hypothyroidism.
4. Vision tests should be done annually as soon as you can get the first appointment.
5. Hearing tests should be done every 2 years from 3-13 years old.
6. Dental tests are done annually from 2 years; x-rays should be taken at ¾ years old and 10 years.
7. At 3 and 10 years, get a cervient spine x-ray to rule out atlantoaxial instability.
8. Generally, your child’s total caloric intake should be below the recommended daily allowance for children of the similar height and age.

12-18 years old

• Check hearing and vision every other year
• Possibility of obstructive airway disease and sleep apnea
• If sexually active, get pelvic exam
• Thyroid function testing yearly
• Cervical spine x-ray at 12 years and 18 years
• At age 16 years get a dental exam done twice yearly
• Update estate planning and custody arrangement

18-20 years old

• Get an echocardiogram once to evaluate for valvular disease
• Pap smears should be done every 1-3 years following age of 1st intercourse
• Breast exam should be done yearly by a physician
• Get a gynaecologist with experience with special needs
• Have annual thyroid exams
• Ophthalmologist should look for keratinocomus and cataracts
• Auditory testing should be done every 2 years
• Twice yearly dental visits
• Mammograms every number of years (ask your physician)
• Update estate planning and custody arrangements

Milestones

If no other issues are a hindrance, he/she should:

                                 Down Syndrome Child         Regular Child

• sits alone                 6-30 months                        5-9 months
• crawls                     8-22 months                        6-12 months
• stands                     1-3 ¼ years                         8-17 months
• walks alone             1-4 years                             9-18 months
• first word                1-4 years                             8-23 months
• first phrase              2-7 ½ years                         15-32 months
• smile                       1 ½-5 months                      1-3 months
• finger feeds             10-24 months                      7-14 months
• drinks from cup      12-32 months                       9-17 months
• uses spoon             13-39 months                      12-20 months
• bowl control           2-7 years                             16-42 months
• dresses self             3 ½-8 ¼ years                     3 ¼-5 years

Erika Tencer is co-founder of Empowerment - A Special Needs Network and a therapeutic recreation specialist. She can be reached at 1.514.603.4446.