When your child first develops nephrotic syndrome, he or she probably needs to stay in hospital for a few days to be carefully monitored.
Your child will probably be in a paediatric unit, a special area of your hospital for children. He or she will be looked after by a paediatrician, a children’s doctor.
A team of healthcare professionals will monitor your child to:
- check the kidney function (how well the kidneys are working)
- measure how much your child is drinking and how much urine he or she is passing
- test the urine with a dipstick
- check the blood pressure
- weigh him or her.
Steroids
The first treatment for nephrotic syndrome is a steroid medicine called prednisolone.
Steroids are made in the body, but can also be made as medicines. They suppress the immune system, or make it less active.
Giving medicine
Your doctor will let you know how often and for how long to give prednisolone. He or she will work out the amount of medicine (dose) that is right for your child – this will be shown on the medicine label.
Prednisolone is available as tablets and solution. Children who are unable to take medicines by mouth may be given a similar medicine called methylprednisolone, which is injected using a needle.
It is important that you follow your doctor’s instructions about when and how much to give. Continue to give the medicine to your child as your doctor has told you, even if he or she is getting better. Do not stop the medicine suddenly.
Vaccines
It is important that your child has the vaccines (immunisations) that he or she needs to reduce the risk of some diseases. Speak with your doctor about these – some vaccines are not safe to give while a child is taking steroids or immunosuppressants.
It is important that your child has the flu vaccine each year. The live attenuated influenza vaccine should not be given to children who are receiving high dose corticosteroids.
Infections
Children taking steroids are more likely to get infections. Speak with your doctor or nurse, and your child’s teacher or daycare manager, about how you can help prevent infection.
Seek medical advice straight away if your child:
- has been in contact with someone who has chicken pox (if they have not had this illness before) or measles (if they have not had the MMR vaccine, which protects against measles, mumps and rubella);
- or, is unwell and you are worried about an infection.
If your child does get an infection, he or she may need to take an antibiotic medicine, which kills the germs that cause infection. Your child must take the medicine for the number of days that the doctor has told you, or until all of the medicine has been taken.
Side-effects
We use medicines to help children get better, but sometimes they have side-effects.
Seek medical advice straight away if your child:
- has fever (temperature above 38°C), with a sore throat or a cough
- has a rash, unusual bleeding that is difficult to stop, or severe bruising
- has bad stomach pain or repeated vomiting (being sick)
Other side-effects
Other side-effects that affect some children are below – speak with your doctor or nurse if you are concerned or need more support:
- irritation to the lining of the stomach – your doctor may give your child some medicine to treat this
- behavioural problems – you may find that your child is more likely to have tantrums, be moody, feel depressed, have difficulty sleeping or have nightmares
- weight gain and larger appetite – you can help by making sure your child has lots of physical activity and eats fruits, vegetables and low-calorie food, rather than food that is high in calories (such as cakes, biscuits, sweets and crisps) and by reducing the portion size
- high blood pressure (hypertension) – if this happens, your child’s blood pressure will need to be controlled so it is in a healthy range.
There may, sometimes, be other side-effects that are not listed above. If you notice anything unusual and are concerned, contact your doctor.
Side-effects if steroids are taken over a long time or in high doses
- Steroids can slow growth and affect puberty. They can also cause growth of body hair and irregular periods in girls. Your doctor will check your child’s growth and development. If you have any concerns, talk to your doctor.
- All steroid medicines, including prednisolone, may affect the adrenal glands so that they produce less of a hormone called cortisol when the body is stressed (e.g. during illness or injury). This means that your child may have more difficulty fighting off an infection, or may recover less quickly from injury or after surgery. If your child is unwell and you are worried about an infection, contact your doctor straight away.
- Your child’s skin may become thinner, and heal more slowly than usual. Acne (spots) may become worse, or your child may develop mouth ulcers or thrush (candidiasis). If you are concerned, contact your doctor.
- Your child may develop problems with their hip bones, or their bones may become weaker (osteoporosis). The muscles around their hips and shoulders may also become weaker. If your child has any difficulty walking or moving around, contact your doctor.
- Occasionally, steroids cause diabetes. If your child seems more thirsty than normal, needs to pass urine (wee) often, or starts wetting the bed at night, contact your doctor.
No-added salt diet
Eating too much salt can make the oedema worse and increase the risk of developing hypertension (high blood pressure), especially while on steroids. Your child should avoid eating or drinking lots of salted nuts, crisps, crackers, soft drinks, fast food meals, takeaways and processed foods (meals that are preprepared, including soups) – these often have more salt than we think.
Do not add extra salt to meals that you cook or at the dining table.
A paediatric dietitian at the hospital may be able to give you support.
Prevent or treating infections – antibiotics
Children being treated for nephrotic syndrome are more likely to get infections. Steroid medicines make the immune system less effective. One important infection is peritonitis, which affects the peritoneum, the area around the organs in the abdomen (tummy area).
Your child may need to take antibiotics to prevent or treat infection – this is often the medicine penicillin.
To prevent infections, you may need to give a small amount of antibiotic twice a day while your child has oedema. This is known as a prophylactic (preventative) dose.
If your child gets an infection, you may need to give a full course of this or another antibiotic to treat it.
It is important that you follow your doctor’s instructions about when and how much to give.
- Medicines for Children | Penicillin V for prevention of pneumococcal infection
- Medicines for Children | Penicillin V for treatment of bacterial infection
Reducing swelling in the body – diuretics
Very occasionally, children need to take diuretics, medicines that help reduce swelling in the body (oedema). Diuretics work on the kidneys to increase the amount of water and salt they remove from the body in urine. Your doctor will examine your child for oedema and measure your child’s weight while they are taking diuretics, to check how well the medicine is working.
Common diuretics are: furosemide, spironolactone and metolazone. Other diuretics that may be used are: amiloride, bendroflumethiazide and chlorothiazide.
Your child will need to eat less salt at the same time as taking these medicines.
Questions to ask the doctor or nurse
- What treatment will my child need?
- How will this help my child?
- How can I help my child prepare for procedures and treatments?
- What happens next if the first treatment does not work for my child?
- How will I know if we need to go back to the hospital or see the doctor?
- Will the nephrotic syndrome come back? How will I know?