FAQs
A Nephrotic Syndrome Diagnosis is an unsettling time for a child and their parents. In many cases the disease is idiopathic, which means there is no known cause. There are several different underlying diseases that can also cause Nephrotic Syndrome, but the treatments and care are broadly the same.
These guidance notes aim to ease concerns and answer questions you may have about how to care for a child with Nephrotic Syndrome (NS) in nursery, school or college. They are general guidance only, and we strongly recommend contacting the child’s Nephrology (kidney disease) team for specific guidance. There is very little understanding of the disease outside the NS community, and sadly, some children and parents said they have felt punished for their frequent absences, or censured for the challenging behavior caused by steroids.
We want this to change, so it’s important this guidance is shared amongst all your staff. Children suffering from NS and their families need nurseries, schools and colleges to be places where sufferers are understood and are a source of support to their pupils. Nephrotic syndrome Trust cannot accept responsibility for information provided. This is for guidance only. Patients are advised to seek further information from their own doctor.
What should I eat?
To help prevent further water retention during a relapse, a no-added-salt diet is recommended and there may be fluid restrictions each day. This means avoiding processed foods and not adding salt in cooking or at the table. The emphasis is on a healthy, balanced diet.
If your kidney function is greatly impaired it’s important to follow a more restrictive diet and closely monitor your blood results, dependent on your latest blood results. For example if potassium is high in your blood avoid, or limit foods with potassium such as bananas and chips; high phosphate levels avoid high phosphate foods such as milk and cheese. You should also seek advice from your renal unit dietician.
For more advice please visit our diet and nutrition page. Alternatively please visit: Kidneycareuk.org
Are there any foods to avoid when taking immunosuppressants?
When you are on Tacrolimus (Prograf) you shouldn’t have Pomegranate, or Grapefruit and star fruit is to be avoided too. If your child is taking cyclosporine your child should not eat grapefruit, or drink grapefruit juice in the hour before. See advice on this page on this very helpful site.
Medicinesforchildren.org.uk
Medicines For Children FAQ
If I’m immunosuppressed is it safe to have vaccinations?
When taking immunosuppressive drugs the immune system is weakened. Live vaccines (including MMR, chickenpox and BCG) are therefore unsuitable for anyone taking, or likely to start taking immunosuppressive medication (including steroids (prednisolone), tacrolimus, mycophenolate, mofetil, cyclophosphamide or regular rituximab infusions) in the near future. This also includes those who have received high dose steroids within the last 3 months.
Flu Vaccine -For those who have Nephrotic Syndrome it’s advised by nephrologists to have the flu vaccine annually, but NOT the nasal one (the live vaccine), but by injection only. It’s also advised that all family members who are in close contact with their loved one with NS also have the injection non live vaccine as well. Please make sure schools are notified.
I’ve been in contact with chicken pox, what is the protocol?
Chicken pox is a highly contagious disease and can make patients with Nephrotic syndrome very ill, so it’s very important you contact your consultant, or ward staff at your nearest children’s unit, or renal unit for advice as soon you are aware that there is a high risk of developing it if your child is on immunosuppressive medication (e.g.steriods). If you have developed a rash anti-virials will be prescribed.
It’s important that the varicella zoster (chicken pox) immunity is known for each patient with Nephrotic Syndrome, so please request a blood test. You may need to do this more than once as immunity can be lost especially if kidney function is declining, or you are having frequent plasma exchange. A chicken pox vaccination should be given at the first opportunity of the patient being non-immunosuppressed. You should also consider immunising non-immune siblings too. Please check local policies and ward protocols in advance of any contact with chicken –pox. Also, if in contact with shingles and measles, or any other serious infection please contact staff immediately for advice.
How common is Nephrotic syndrome?
Nephrotic Syndrome is a rare renal condition and GP’s may only see one case of NS in the whole of their career. Most children are diagnosed between the ages of 2 and five years old. It’s estimated that 1 - 4 per 50,000 children and adults are diagnosed per year in the UK. Nephrotic Syndrome is much more common in children of Asian descent, but still it’s not understood fully why that is. It is much more prevalent in India and Africa. According to findings on a kidney biopsy, MCD (minimal change) is the most common type of nephrotic syndrome affecting around 78 per cent of children.
FSGS (Focal segmental glomerulosclerosis) affects around eight per cent and MPGN (membranoproliferative glomerulonephritis) around six per cent.
What is considered a relapse?
If you are leaking 3+ protein for three consecutive days, or leaking 2+ over several consecutive days. Always contact your nephrologist if you are relapsing as you may need to be prescribed steroids, or an alteration in your current prescription and repeat bloods to make an assessment of your health.
My consultant said my child will grow out of these relapses, is that true?
Many children’s relapses do become less over the years, it very much depends on how responsive they are to steroids. It’s much more likely for those who have (MCD) minimal change disorder. For some children relapses become more frequent and will need second line of medication, or even further medication changes to stop kidney leaking protein. Then there is a smaller percentage of children which unfortunately will not respond to any medication.
Is there a cure for Nephrotic syndrome?
No known cure, only a handful of treatment options currently available to treat and manage Nephrotic Syndrome. The first line treatment for Nephrotic Syndrome is a course of high dosage prednisolone (steroids) over a four week period to try to stop kidneys leaking protein. If remission has not been successfully reached then your consultant may request a biopsy to establish what type of NS to decide the next best treatment available.