Patient and Parent Education about NEPHROTIC SYNDROME

What you should know about Nephrotic syndrome......

In nephrotic syndrome lot of protein pass through kidneys result in a low plasma protein (albumin) and oedema (body swelling).

Prognosis

One third of children resolve directly, another one third continue with infrequent attacks and other one third become Steroid dependent (two consecutive relapses occurring during corticosteroid therapy or within fourteen days after its cessation). 10%- 15% of children become steroid resistant.Reassurance that progression to end stage renal failure is extremely rare is important.

Parental motivation and involvement is essential in the management of a child with nephrotic syndrome. Patients and parents who have a clear understanding of the disease comply better with treatment. 

Prior to discharge following treatment of the initial episode – the following aspects of management must be emphasized.

• Urine examination for protein at home. Parent/patient should have a clear understanding of grading proteinuria. How to do....(click here)
• Examination should be done every morning during a relapse, during intercurrent infection or if the child has even mild periorbital oedema.
• Urine is examined twice / thrice a week during remission.
• The dipstick test is carried out by dipping the marked end of the strip in urine for 3 seconds and comparing the colour change with the code given in the pack

• Maintain a diary showing proteinuria, medications received and intercurrent infections. 

• Ensure normal activity and school attendance. It is important that the child participates in all activities and sports.

• Bed rest.     This is not required and could be harmful. (Predisposes to thrombosis)

• Fluid restriction.   This is usually not recommended.

• Infections are an important cause of morbidity and mortality and parents need to understand the measures needed for preventing frequent infections (avoid crowded place…..) and the importance of seeking early treatment for infections (fever, cough, excessive crying, abdominal pain).

• Diet.      It is important to give clear instructions as most parents have their own views and beliefs regarding dietary restrictions in kidney diseases. A balanced diet adequate in protein and calories with a protein intake of 1.5-2 g/kg/day is recommended. A high protein diet had not been shown to improve serum albumin concentration. (The average Sri Lankan diet contains approx. 0.8g/kg/day of proteins) Not more than 30% calories should be derived from fat and saturated fats should be avoided. Carbohydrates are best given in complex forms. A modest reduction in salt is advised in the presence of oedema. Snacks containing high salt are best avoided during this period. Fruits and fruit juices can be given without restrictions. Corticosteroids stimulate the appetite, and advice should be given about ensuring physical activity and preventing excessive weight gain.

• All killed vaccines included in EPI programme should be offered to these children preferably while receiving alternate day prednisolone. Parents must be made aware that live vaccines are contraindicated while on treatment with steroids.

Live vaccines are contraindicated in children receiving high dose systemic steroids (prednisolone 2mg/kg/day or 20mg/day in children >10kg body weight ) until the steroids have been discontinued for 3 months. (BNF;2006, SLMA guidelines on vaccines:2004)

Hepatitis B vaccine should be given to all the children who were not vaccinated previously.

• Educate about prednisilone. 
• Admit the child if there is oedema and +2protein for more than two days at home.