Go through these in order and stop at the first one that applies. If you are reading this for someone else, answer for them.
Routine follow-up should be coordinated with a clinician familiar with metabolic disorders.
The schedule depends on age, symptoms, current treatment, and previous test results.
Follow-up should not be stopped simply because pain or urine discoloration improves.
The article also says
Visits may review pain, mobility, exercise, work or school needs, urinary symptoms, and changes in hearing, vision, or pigmentation.
Clinicians may examine the spine and joints and assess whether physiotherapy, mobility aids, or pain-management changes would help.
Heart evaluation becomes increasingly important in adulthood.
A clinician may listen for a heart murmur and decide when an echocardiogram or cardiology review is appropriate.
Kidney and urinary evaluation may be needed if there is a history of stones, infections, blood in the urine, or difficulty urinating.
People taking nitisinone need regular monitoring of HGA, tyrosine, nutrition, and possible medicine-related effects.
Relatives may wish to discuss carrier testing or diagnostic testing after the familial HGD variants are known.
Genetic counseling can help families understand what results may mean before testing is arranged.
Every sign above is quoted from the sofidex article on Alkaptonuria. If you are not sure, err upward — it is always reasonable to be checked.