This page offers some recommendations on how to care for children suffering from this rare disease, the idiopathic nephrotic syndrome, a long-term illness.
This disease combines a high proteinuria (50 mg/kg/jr) and an hypoalbuminemia (> 30g/l) .
Signs of nephrotic syndrome in the child:
- Presence of oedema,
- Proteinuria detected with an urinary strip (presence of protein in the urine).
It can be associated with:
- A kidney failure,
- Renal complications and/or extra symptoms.
So that the parents and the child suffering from nephropathy understand:
- Treatments (corticosteroid therapy, vitamin D)
- Importance of proper nutrition
- Risks of complications
- Nephrotic syndrome
- Related to treatment
- Need for supervision
- The observance of treatment (in particular in adolescents)
- The proteinuria (with reactive strips, twice a week)
- Vaccinations (they can start off the syndrome)
Thus, they will be able to dialog with the medical community.
Psychological support can be set up if necessary.
- The maintenance of a normal schooling must continue,
- Having a regular physical activity must be adapted to the clinical status of the child.
This diet prevents the child from putting on weight under corticosteroid therapy, but it must also be followed at the time of the attacks.
- Sodium free diet
- Prohibited food
- Cured meats (ham, pies, rillettes)
- Smoked meats, fish
- Cereals (bread, cookies…)
- Ready made meals, catering
- Some mineral waters
- Authorised food
- Homemade dishes (non-industrial)
- Food with reduced sodium content (diet products)
- Diet low fat (reduce: butter, cheeses).
- Diet low in sugar (limit sweets, pastries, jam…).
A management in acute phase until obtaining the remission of the nephrotic syndrome:
- Diuretics ,
- Drip with albumin.
In case of complications, others treatments can be considered.
- If failure of the specific treatments (corticosteroid therapy…) :
- Converting Enzyme Inhibitors (CEI),
- Angiotensin II receptor antagonists (ARB 2).
- Hypolipidemic (statin).
- Prevention and treatment of thrombosis:
- general measures (to banish the central catheters, perfusions…),
- Prevention of bacterial infections (anti-pneumococcal vaccine).
- Corticosteroid therapy .
- Immunosuppressants .
It is recommended to have an consult once a year the nephrologists paediatrician. Within a framework where there are complications, visits can be closer in succession.
It is advised to:
- Supervise the proteinuria (reactive strips two to three times per week by the family),
- Make a clinical monitoring (weight, blood pressure measuring),
- Set up a biological monitoring every 3 months in the event of persistence of the proteinuria.
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Syndrome néphrotique idiopathique de l'enfant
Síndrome nefrótico idiopático del niño