Nephrotic Syndrome Steroid Side Effects: Monitoring and Diet

The side effects of long-term steroid treatment in childhood nephrotic syndrome are hypertension, obesity, impaired glucose tolerance, short stature, bone disease, cataracts, skin damage, infections and behavioural change. Careful dosing, structured monitoring of growth, blood pressure, eyes and bone, and the right diet limit that damage while the child's disease runs its course.

Dr. Shraddha Lohia, then Consultant, Paediatric Nephrology at Fortis Memorial Research Institute, Gurgaon, India, devoted a large part of her masterclass to this side of care, because it determines how a child with relapsing disease grows up. Her message to prescribers was blunt: give steroids very carefully. This article covers the side effects she sees, how she monitors for them, and her approach to diet, immunisation and supplements. For the medicines that reduce steroid exposure in the first place, see steroid-sparing agents, biopsy and genetic testing; the complete guide to difficult nephrotic syndrome gives the wider picture.

Steroid side effects in children with nephrotic syndrome

The corticosteroid toxicity Dr. Lohia described touches almost every body system.

Metabolic and cardiovascular. Arterial hypertension, impaired glucose tolerance progressing in some children to diabetes, hyperlipidaemia and obesity.

Behavioural and psychiatric. Behavioural changes occur, and some children develop severe psychiatric problems. Dr. Lohia described one child who ran away from home after steroids were started: a rare event, but one that prescribers and parents should know is possible.

Infection. Steroids depress immunity, and infection is both a complication in its own right and the usual trigger for relapse.

Gastrointestinal, bone and muscle. Gastritis, osteoporosis, bone mineral disease and myopathy.

Endocrine. Adrenal insufficiency. Children with many relapses can also develop hypothyroidism, caused by loss of thyroid hormone and its binding protein in the urine during heavy proteinuria rather than by steroids.

Eyes. Cataracts, raised intraocular pressure, and fundus changes from hypertension.

Skin and hair. Long-term steroids make the skin atrophic, very thin and friable. Children with many relapses can develop striae (stretch marks), which break down easily and become infected, so skin care is part of treatment. Acne is common, and frequent relapsers can develop marked hair loss.

Growth. Short stature is among the long-term consequences in children who stay on steroids.

Monitoring a child on long-term steroids

Dr. Lohia monitors growth, eyes, blood pressure and bone health in every child on long-term steroids, and thyroid function, hair and skin in children with many relapses. Families often fear steroids, and the question they ask is what years of treatment do to a growing body. Dr. Lohia's monitoring answers it domain by domain.

Growth

Height and weight are measured and plotted on a growth chart. If the child is faltering, the response is nutritional: better protein intake and dietary support. Taking a child off steroids, once a steroid-sparing agent is working, is what allows growth to stay on track.

Eyes

Eye examination is required every year for a child on long-term steroids. Dr. Lohia asks for the fundus, a check for cataract and measurement of intraocular pressure.

Blood pressure

Blood pressure is harder to measure well in children than it looks. Not every clinic has a cuff of the right size, and white-coat hypertension (a reading raised by anxiety in the clinic) is easily mistaken for the real thing. Dr. Lohia's method separates the two:

1. Four readings are taken in hospital.
2. Parents are given the target range and record at least one week of readings at home, with the correct cuff.
3. Readings are taken at different times of day, not at the same hour every day.
4. Each reading is logged with the child's position and what the child was doing.

The context changes the number. A child who has just been running around, or who is watching a frightening film rather than a funny one, will have a higher reading, just as an adult does after coffee. Only with that context can a doctor decide whether a reading is truly in the hypertensive range.

Bone health and calcium

Dr. Lohia's principle is not to wait for a fracture. Calcium supplementation is essential because steroids draw calcium out of bone and weaken it. Vitamin D is almost always low when it is checked in these children, so she supplements routinely, preferring a 12-week course of weekly vitamin D given once every six months, which in her experience works very well. Levels should still be monitored.

One laboratory trap deserves attention. When serum albumin is low, total serum calcium reads falsely low. Calcium should be corrected for albumin before a child is diagnosed with hypocalcaemia.

Thyroid, hair and skin

Children with many relapses need closer investigation: hair loss, hypothyroidism and changes in the skin that set them visibly apart from healthy children are signals that cumulative steroid exposure is taking a toll.

Stomach protection: the case against routine PPIs

Proton pump inhibitors (PPIs) are often given alongside steroids for gastric protection. Dr. Lohia's view is that the evidence of benefit is inadequate, and she prefers to avoid them. She gives PPIs only when they are needed, partly because PPI use carries an associated risk of chronic kidney disease.

Vaccination in children with nephrotic syndrome

Immunisation matters doubly in nephrotic syndrome: it protects against infection, and every infection prevented is a relapse avoided. But a child on steroids or other immunosuppressants responds less well to vaccines.

Dr. Lohia's approach for children with frequent relapses or steroid dependence:

• Bring the steroid dose down to the bare minimum before vaccinating.
• Give inactivated (killed) vaccines first.
• Move to live vaccines afterwards.
• Add pneumococcal and influenza vaccines to the routine schedule.

Live vaccines are generally deferred while a child is on high-dose daily steroids or on other immunosuppressive drugs such as MMF, calcineurin inhibitors or cyclophosphamide.

Diet for children with nephrotic syndrome

Dr. Lohia's diet plan covers fluid, protein, fat and salt, with calcium and vitamin D supplements alongside.

Fluids

Fluid intake depends on the child's state. In relapse, Dr. Lohia sets fluid intake at 400 ml/m² a day. That figure corresponds to insensible fluid losses, and standard practice adds the previous day's urine output to it. A child in remission takes normal maintenance fluid, with no need for more or less.

Protein

Children on steroids are usually hungrier than normal, which makes the composition of the diet important. There are two schools of thought on protein. One holds that less dietary protein means less protein leaking into the urine, and so limits intake to no more than 1 g/kg a day. The other recommends a normal protein intake. Dr. Lohia follows the second: in her view, a child who loses more protein develops more oedema and is more prone to infection. She recommends that the child eats a regular amount of protein, and notes that diets in India are often very low in protein, which needs specific attention.

Fat

Fat should make up less than 30% of total food intake. In practice that means fewer bakery products and less fried food, which matters for a child already at risk of steroid-related obesity and hyperlipidaemia.

Salt

During oedema, the family should stop adding extra salt and avoid pickles. Once the child is in remission, normal salt intake can resume.

Supplements

Calcium and vitamin D, as described above, complete the dietary plan.

Long-term monitoring checklist for nephrotic syndrome

Nephrotic syndrome has a chronically relapsing course, and supportive care is what keeps a child healthy across it. Dr. Lohia's recommendations reduce to a short monitoring checklist:

Families need as much support as the child. Parents tend to be apprehensive, and the long course demands constant reassurance and counselling. The questions families ask, and how Dr. Lohia answers them, are in the complete guide; the management of acute oedema with diuretics and albumin is in the diagnosis and classification article. The question of how steroids affect a growing child, raised during the session, is answered on the Live Discussion page.