Poor weight gain / Failure to thrive
| Feeding therapy; gastrostomy tube placement may be required for persistent feeding issues. 1 | Low threshold for clinical feeding evaluation &/or radiographic swallowing study when showing clinical signs or symptoms of dysphagia |
Consider use of hypoallergenic or elemental formulas in infants. | |
Bowel dysfunction
| Standard treatment for gastroesophageal reflux | |
Standard treatment for Hirschsprung disease & pyloric stenosis 1 | Referral to gastroenterologist |
Stool softeners, prokinetics, osmotic agents, or laxatives as needed | For constipation |
Neonatal cholestatic liver disease
| Cholesterol &/or bile acid therapy | Consider referral to hepatologist. |
Developmental delay / Intellectual disability
| See Developmental Delay / Intellectual Disability Management Issues. | |
Psychiatric disturbance & behavioral issues
| Standard treatment per psychiatrist |
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Sleep disturbance
| A trial of melatonin; if insufficient, other hypnotic may be considered. | |
Epilepsy
| Standardized treatment w/ASM by experienced neurologist |
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Hypotonia & later hypertonia
| Orthopedics / physical medicine & rehab / PT & OT incl AFOs & other orthotics, stretching to help avoid contractures & falls | Consider need for positioning & mobility devices, disability parking placard. |
Tendon release surgery 1 or Botox® therapy | In older children w/significant hypertonia |
Photosensitivity
| Skin protection through proper clothing, avoidance of sun exposure, & UVA- & UVB-protection sunscreen | |
Genital anomalies
| Standard treatment per urologist &/or gynecologist 1 | |
Cleft palate
| Standard treatment 1 | |
Dental anomalies
| Proper positioning, choice of dental devices, & sedation techniques need to be considered. 1 |
Muzzin & Harper [2003]
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Cataracts, ptosis, &/or strabismus
| Standard treatment(s) per ophthalmologist 1 | |
Congenital heart defects
| Standard treatment per cardiologist 1 | |
Limb defects
| Syndactyly of hands &/or feet &/or polydactyly may require surgical repair. 1 | |
Recurrent otitis media
| Standard treatment | Incl consideration of tympanostomy tube placement. 1 |
Hearing loss
| Hearing aids may be helpful as per otolaryngologist. | Community hearing services through early intervention or school district |
Adrenal insufficiency
| Standard treatment per endocrinologist 5 | |
Family/Community
| Ensure appropriate social work involvement to connect families w/local resources, respite, & support. | Ongoing assessment of need for palliative care involvement &/or home nursing |
Coordinate care to manage multiple subspecialty appointments, equipment, medications, & supplies. | Consider involvement in adaptive sports or Special Olympics. |