When your child first develops MPGN, he or she probably needs to stay in hospital for a few days to be carefully monitored.
Some children need to take steroid medicines. Some will need other treatment for complications, such as swelling in their body and high blood pressure. These are explained below.
A few children will need dialysis, which uses special equipment to remove waste from the body if their kidneys are not working well enough.
It is important that your child follows any treatment plan outlined by your doctor.
Where will my child be treated?
Your child will probably be referred to a paediatric renal unit, a specialised unit that treats babies, children and young people with kidney conditions and may be in a different hospital to your own. He or she will be looked after by a team, including a paediatric nephrologist, a doctor who treats children with kidney problems.
Outpatient
Your child can go home when the doctor thinks that his or her health is stable. Often, your child will need to visit the hospital during the day – as an outpatient – for check ups or more treatment.
Steroids
Your paediatrician may prescribe a steroid medicine to your child – this is usually the medicine prednisolone. Steroids are chemicals that are made naturally in the body but can also be made as medicines. They suppress the immune system, or make it less active. Your doctor will work out the amount of medicine (the dose) that is right for your child. The dose will be shown on the medicine label. Your child may need to take a large dose each day to start with, and then the dose is slowly reduced. Your doctor will usually monitor blood and urine tests to help decide when to change doses.
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.
Read more about hospital visits and the healthcare team
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.
Infections
Children taking these 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. Contact your doctor 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.
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.
Medicines for Children advice about antibiotics
Side-effects you need to do something about
We use medicines to help children get better, but sometimes they have effects we do not want – side effects. Contact your doctor straight away if your child has any of the following while on steroid medicines:
- fever (temperature above 38°C), with a sore throat or a cough
- a rash or severe bruising
- bad stomach pain or repeated vomiting – sometimes steroids can cause ulcers in the stomach.
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:
- nausea, vomiting, stomach pain and/or indigestion (heartburn) due to 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) – your child’s blood pressure will be regularly checked, and if it is too high, will need to be controlled by adjusting the amount of fluid drunk or taking medicines.
There may, sometimes, be other side-effects that are not listed above. If you notice anything unusual and are concerned, contact your doctor.
Changes to eating and drinking
Your child may need to make temporary changes to what he or she eats – for example, less salt and less of certain foods. He or she may also need to drink less fluid, such as water, squash and soft drinks. Your doctor, nurse or a paediatric dietitian will help you and your child make these changes.
Read more about side-effects of long-term use of steroids
When steroids are needed over a long time, or in high doses, they may have other side-effects. 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.
- 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.
- Your child’s skin may become thinner, and heal more slowly than usual. Stretch marks can result from this; it is important to follow instructions about the best amount of fluid to drink to reduce the risk of stretch marks. Acne (spots) may become worse, or your child may develop mouth ulcers or thrush (candidiasis).
- 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.
Controlling blood pressure
Some children with MPGN have high blood pressure (hypertension). If your child has hypertension, he or she may need to change what they eat and drink, and may need medicines, to control the blood pressure.
Reducing protein loss in urine and controlling blood pressure
Some children need to take medicines for:
- proteinuria – to reduce the amount of protein lost in their urine, and/or
- hypertension – to reduce or control blood their pressure so it is in the healthy range.
These are usually medicines called angiotensinconverting enzyme inhibitors (ACE inhibitors) or angiotensin-II receptor blockers (ARBs). Common ACE inhibitors are: captopril, enalapril and lisinopril.
Research suggests that, in some children, these medicines will reduce the risk of long-term kidney problems.
It is important that you follow your doctor’s instructions about when and how much to give. Do not stop the medicine suddenly.
Reducing swelling in the body – diuretics
Very occasionally, children with MPGN need to take diuretics, medicines that help reduce oedema (swelling in the body). Diuretics work on the kidneys to increase the amount of water and salt they remove from the body in urine.
If your child is taking diuretics, he or she will need to go to follow-up appointments. Your doctor will examine your child for oedema and measure his or her weight. This helps find out how well the medicine is working.
Common diuretics are: furosemide, spironolactone and metolazone. Some of the other diuretics that may be used are: amiloride, bendroflumethiazide and chlorothiazide.
Managing reduced kidney function
For some children, the kidneys do not work as well as normal during this illness – they have reduced kidney function. The severity of this varies, but most do not need any special treatment and their kidney function will return to normal.
A small number will have more serious kidney problems, and will need further treatment. Dialysis uses special equipment or a machine to ‘clean’ the blood, removing waste products and extra water and salts. Most of these children need this treatment for a short time only, but a few need it for longer.
Your child’s healthcare team will give you information to help make sure your child has the best type of dialysis.
Questions to ask the doctor or nurse
- What treatment does my child need?
- How will the treatment help my child?
- How long will my child be in hospital?
- How can I help my child prepare for procedures and treatments?
- If the first treatment does not work in my child, what happens next?
- How will I know if we need to go back to the hospital or see the doctor?
- Will the MPGN come back? How will I know?
MPGN is a chronic condition, which means that it does not go away quickly, and may last for years. Most but not all children with MPGN will have long-term kidney problems. Your doctor will speak with you about how MPGN might affect your child in the future.
Urine testing at home
Your doctor may ask you to do urine tests at home to find out whether the MPGN has gone away (gone into remission) or whether it comes back (has a relapse). You will be given special, clean containers to collect the urine, and dipsticks to dip into the urine and check for any protein and/or blood in the urine. Your child’s healthcare team will show you how to do this. If there is proteinuria (a lot of protein in the urine), you will need to tell your doctor, and bring the urine sample for further testing. This may mean there is a greater risk that your child will develop long-term kidney problems.
Follow up
All children with MPGN need follow-up appointments at the hospital or clinic, to check for any health problems. These may continue throughout childhood and sometimes adulthood.
It is important to go to these appointments, even if your child seems well – remember to bring the results from your home urine testing. You will also have the opportunity to ask any questions. At these appointments, your child may have:
- his or her height and weight checked
- a physical examination
- urine tests – to check for blood, protein and other substances in his or her urine
- blood tests – to check for the amount of protein and other substances in his or her blood, and measure his or her kidney function
- his or her blood pressure measured.
Medicines
Some children need to take angiotensin-converting enzyme inhibitors (ACE inhibitors) or angiotensin- II reception blockers (ARBs) over a long time, and sometimes into adulthood.
Common ACE inhibitors are:
- captopril
- enalapril, and
- lisinopril.
Doctors understand that, in some children, these medicines may reduce the risk of long-term kidney problems.
Long-term effects
Children with type 2 MPGN (dense deposit disease) are more likely than children with type 1 or type 3 MPGN to have more serious problems.
Chronic kidney disease
Some children may progress to later stages of chronic kidney disease (CKD) – their kidneys stop working as well as they should. CKD may progress to final stages of CKD (kidney failure), and these children may need specialist treatment, including dialysis and/or a kidney transplant.
Sometimes a child who had MPGN before the kidney transplant can get the disease again in the new kidney. However, this is usually less serious and does not always affect the kidney function.
If your child has progressed to later stages of CKD, you will learn more over time about what to expect and how to help manage the condition.
Impact on your child and your family
Children who have been successfully treated for MPGN can usually do the things that other children their age do. They should be able to continue going to school or nursery. They can play with other children and stay active.
Living healthily
Your child can help protect his or her kidneys by leading a healthy lifestyle through their child and adult years. This includes:
- eating a healthy diet – with at least five servings of fruit and vegetables a day, taking care not to eat too much salt, sugar and fats (especially saturated fats)
- getting plenty of exercise
- not smoking.
Further support
This can be a difficult and stressful experience for your child and the whole family, including other children.
If you have any concerns or need additional support, speak with your doctor or nurse.