Schools and Nurseries
The Nephrotic Syndrome Trust (NeST) Facebook community is here to support you, wherever the NS journey takes you.
The child should receive a steroid treatment card, which should be shown when they receive medical treatment away from their specialist hospital or Nephrology team. It can be dangerous to suddenly stop using steroids, and three will almost always be a weaning programme. The child should receive a referral to their local children’s community nursing team, who will be able to do blood tests, and offer other support in the home.
More complex cases may qualify for disability living allowance or carer’s allowance, both can be applied for using the following link.
Some cases many be eligible to apply for a wish from one the many wish foundations, who provide experiences to children and young adults who have life changing conditions.
Hospital follow up
Following their diagnosis, a child will have to make frequent outpatient visits. Most hospitals are happy to rearrange clinic appointments if they coincide with exams, school trips or anything important happening in school, but need plenty of advanced warning to do so. Some children will have individual special needs, which the child’s Nephrology team should be happy to discuss.
It is now common knowledge that sun exposure can cause problems, but children on steroids and immunosuppression are at a much increased risk of skin cancer if over exposed to the sun. We therefore encourage hats, T-shirts and sun block. Sun block should have both high UVA and UVB protection.
Access to toilets
All children should empty their bladders regularly; however, for NS children this is essential to prevent problems. Children with NS must be allowed to use the toilet without asking permission, because many sufferers have difficulty holding urine, as well as it being bad for kidneys.
Food and Drink
It is vital that children with NS manage their diet. Each child will have a fluid restriction, and many will want to keep their water bottles with them, so their intake can be controlled. Strict fluid control is very important for children whose kidney function is declining, as their entire daily intake may be less than a litre.
Increased appetite (due to drug therapy) is common, so children must be allowed healthy snacks with them. It is important that their meals are very low salt, as salt increases oedema, blood pressure and
thirst, all of which can have serious complications for children with NS. Many children will have additional special dietary requirements, such as low cholesterol, or low sugar as high doses of steroids can sometimes cause diabetes. You should obtain guidance from the Nephrologist or Nurse Practitioner on adjusting the child’s school meals, as you would with any other medical dietary requirements.
A healthy normal diet is recommended, to avoid long-term weight gain.
Education and Hospital School
Children with NS will be out of school more often than is usual. They will have regular appointments, sometimes at hospitals far from home due to the specialist nature of the treatment needed; have longer and more frequent absence because of the condition or need to be excluded because of an outbreak of an infectious disease.
A child with NS must have a Health Care Plan in place, which is agreed with their Nephrology team and parents. Plans should be put in place to manage their education while absent, so children do not fall
behind. Be prepared to send homework daily, have regular meetings with parents and provisions in place to catch up on their return.
Some children will have hospitalization at some point with Nephrotic Syndrome, you should contact hospital school who will support the child in their learning while absent from mainstream school or college.
The SENCO at school or College should be engaged at diagnosis, and a referral made to the education support team for medical absence for absences in excess of 3 weeks. Many schools successfully use Skype to deliver support or for the child to join lessons / lectures. This also helps children reintegrate after lengthy absences, and eases the return process. Your local education authority or SENDIASS will be able to guide you on how to set up this facility.
It is important to work with and support children and parents during periods of absence, they will be managing their child’s chronic illness, as well as their education and emotional well-being, sometimes having to juggle work and other commitments too.
Please inform the parents if there is an outbreak of an Infectious disease in your nursery/ school or college as these can be much more serious in an immuno-suppressed child. We consider an infectious contact to be when the child is in the same room as an infectious person for thirty minutes or more, or side by side play for 10 minutes, the only exception to this is with measles and chickenpox.
Measles and chickenpox are particularly serious and can have life threatening complications. They have such potential consequences, precautions are usually taken if there is confirmed measles anywhere within nursery / school / college or they have been exposed to chickenpox. Even though a child with NS may have had chickenpox before, they may no longer be immune because of protein loss and immune suppression treatment. If they are non-immune and come into contact with chickenpox a protective injection or medication will be required.
If a measles outbreak occurs in your nursery/school/college, the immuno-suppressed child will need a protective medicine by injection, following which they will have to be removed from nursery or school for the duration of the outbreak. This could have a serious impact on the child’s education which would need to be addressed on an individual basis should the need arise.
We cannot underestimate the importance of informing the parents immediately if there is a known infectious disease in the nursery / school or college.
All children will need medicine to suppress their immune system, these medicines reduce the child’s ability to fight infection, and make the child more susceptible to serious infection. The child may require multiple other medicines, which will vary depending on their symptoms. Sometimes these may be required while they are in your care, and you will need training to administer them.
There are multiple side effects associated with these medicines. When in relapse or following a diagnosis the drugs are given in large doses, changes in the physical appearance can be dramatic and this period can be difficult for the child. The first line medication for Nephrotic Syndrome is steroids, when on this medication the child’s face will appear swollen and they will gain weight. The child may experience mood swings and can be tearful or even angry at times. They may also experience headaches and hand tremors.
They will be hungrier than usual – so must be allowed to have healthy snacks, this will help with the mood swings also. Children will need pastoral support to help them recognise and modulate their behaviour when they are suffering steroid mood swings.
Nephrotic Syndrome overview
Nephrotic Syndrome is a rare sometimes chronic condition, affecting around 1 in 50,000 children. It is characterized by the kidneys leaking large amounts of protein in to the urine causing it to be foamy; low albumin causes oedema; high cholesterol and high blood pressure. Oedema collects around the eyes making them swollen, and the abdomen is visibly distended from fluid retention. Oedema is not limited to the face and torso, it is common in the peripheries; and may cause difficulty running and walking. Oedema can be serious, and many children are given diuretics or albumin infusions to reduce it until the disease can be brought under control.
Many children are worried about the change in their appearance, due to the illness and medicine side effects. We know teasing and bullying has occurred in some schools in the past and want you to be aware of this, so if it happens - it can be resolved swiftly. Some children will want their school friends to know of their illness whilst we respect others will wish their details to remain confidential. Speak with the parents about whether they want you
to let pupils know what’s happening and to be kind and understanding toward the sufferer.
If a child is in relapse and therefore leaking large amounts of protein, their immune system will be compromised, this coupled with any immune suppression or steroid medicines they are taking, which means they will get sick more often than usual, and may stay ill for longer, as it is more difficult for them to fight off the illness. Loss of protein will mean they tire more easily than usual. It is a good idea to let them have a quiet place where they can rest and re energize. This will help them stay in school for longer.
Many children will respond to treatment with steroids, however, there may be relapses – sometimes triggered by simple illnesses like sore throats or coughs. There is no one cure, and treatment is always tailored to the symptoms and needs of the individual. Some children will suffer from NS for their entire education career or may ultimately require a transplant. Another common symptom of NS is low vitamin D levels, which can cause painful cramps,
parents must be alerted, so they can discuss with their Nephrology team, who may prescribe an activated form of vitamin D to ease these symptoms.
You should always engage and seek guidance from the child’s Consultant Nephrologist or specialist Nurse Practitioner when you are caring for a child with NS, as needs can be complex and ongoing. The initial period following a diagnosis is a stressful and uncertain period for both the child and their family and medications will have side effects. Your support will help the family cope at this difficult time.
What do kidneys do?
The kidneys are complex organs, which have a number of vital functions. They are responsible for keeping the body in a state of balance by filtering unwanted waste products from the blood and excreting them in the urine. They play a role in controlling blood pressure, producing red blood cells and maintaining healthy bones.
Albumin is a protein that helps keep fluid in your bloodstream so it doesn't leak into other tissues. It also carries various substances throughout your body, including hormones, vitamins, and enzymes.
Proteins are important for the health and growth of the body's cells and tissues; important types of proteins are immunoglobulins, or antibodies to fight infection.