Once diagnosed, the long-term treatment and follow up of the patients should be done by a pediatrician who will coordinate a multidisciplinary team directed to the symptoms the patient manifest. We recommend the following areas to be covered:

1. Measurement of IGF-1 and IGF-BP3 to screen for growth hormone deficiency.

2. A brain MRI taken after 40 months of age to assess for abnormalities of white matter.

3. A full assessment by a speech pathologist.

4. A full assessment for physical and occupational therapy.

5. Formal cognitive and behavioral testing by a licensed pediatric psychiatrist. 

6. A sleep apnea test/sleep study.

7. An EEG test to test for abnormal electric activity that could cause/predispose seizures.

8. A consultation with a gastroenterologist for any reflux, vomiting, or chronic constipation/diarrhea issues.

9. An assessment by a pediatric ophthalmologist.