Table 1.
Follow-up for a child with CNS
| Assessment | Frequency during follow-up |
|---|---|
| Clinical | |
| Patient history (fever episodes, pain, abdominal discomfort, swelling, fatigue, adherence to medication) | At every visit |
| Physical examination including signs of oedema (e.g. ascites, pericardial and pleural effusions), tetany, skeletal status and extrarenal features | At every visit |
| Blood pressure | At every visit |
| Full neurological examination and standardized assessment of cognitive status | Monthly for 3 months, yearly thereafter |
| Growth chart: height or length, weight, head circumference if age <2 years, calculation of BMI and annual height velocity | Monthly for 3 months, every 3 months thereafter |
| Biochemistry | |
| Blood: complete blood cell count, sodium, chloride, ionized calcium, phosphate, magnesium, creatinine, urea, protein, albumin, cholesterol, fasting triglycerides and glucose | Monthly for 3 months, every 3 months thereafter or as appropriate |
| eGFR (Schwartz formula) | Every 3 months (more frequently in CKD stage 4) |
| ALP, PTH | Every 3 months, more frequently in advanced CKD (stages 4–5) |
| 25(OH) vitamin D3 | Every 6 months, yearly after age 12 months |
| TSH, free T4 | Monthly for 3 months, thereafter every 3 months or as appropriate |
| IgG | Trough levels as appropriate |
| Diet | |
| Assessment and advice from a dietician including salt, K, calorie and protein intake | Monthly in infants, thereafter every 3 months |
| Imaging | |
| Ultrasound of abdomen and pleural space (kidney echogenicity and size, ascites, effusions, thrombosis) | Every 3 months until the age of 7 years in children with exonic WT1 variant |
| X-ray of the left knee: mineralization and left wrist for bone age assessment in children aged >5 years | Yearly or as appropriate |
| Extrarenal involvement | |
| Assessment depending on the underlying disease | As appropriate |
| Preparation for kidney replacement therapy | |
| Referral to dialysis and/or transplant centre; preparation for dialysis including fistula creation and transplantation | Around 6 months of age and not later than when eGFR is <30 ml/min/1.73 m2 |
ALP, alkaline phosphatase; CKD, chronic kidney disease; eGFR, estimated glomerular filtration rate; PTH, parathyroid hormone; TSH, thyroid-stimulating hormone