Children with STEC-HUS are usually admitted to hospital, where they are carefully monitored during their illness to make sure they have the right amounts of water, salts and nutrients. Some children need medicines to help treat complications of the disease, such as high blood pressure (hypertension), high blood sugar and anaemia. Some children need a blood transfusion. More rarely, surgery on the tummy is needed.
The kidneys do not work as well as normal during this illness. In some children, this is more serious and they need dialysis for some time, which uses special equipment to remove waste and extra water and salts from the body.
Further information is given below.
It is important that your child follows any treatment plan outlined by your doctor.
Where will my child be treated?
Hospital stay
Your child will probably be admitted to hospital for a few days or a few weeks. He or she will be looked after by a paediatrician, a doctor who treats babies, children and young people.
If your child is suspected of having a STEC infection, he or she needs to stay in an isolation cubicle. This is a special area of the hospital that keeps your child away from other patients. This is because STEC can be passed on to others very easily. Your hospital staff will let you know if there is anything you need to do to prevent spreading the infection.
Referral to specialist services
Many children are referred to a paediatric renal unit, a specialised unit for babies, children and young people with kidney conditions, which may be in a different hospital. This is often needed for children with some complications, including hypertension and/or acute kidney injury (when the kidneys stop working as well as they should), and who may need dialysis.
Read more about your child’s healthcare team
Healthcare team
Your child’s healthcare team may include a:
- paediatric nephrologist – a doctor who treats children with kidney problems
- renal nurse – a nurse who cares for children with kidney problems
- paediatric dietitian – a professional who advises what your child should eat and drink during different stages of a kidney condition
- renal social worker – a professional who supports you and your family, especially with any concerns about money, travel and housing related to looking after your child with kidney disease
- renal psychologist – a healthcare professional who supports your child and family, especially with emotional stresses and strains from having or look after a child with kidney disease
- play specialist – a professional who uses dolls and other toys to help your child prepare for procedures, such as blood tests and dialysis
- renal pharmacist – some hospitals have a pharmacist who specialises in medicines for children and/or adults with kidney problems.
Monitoring in hospital
Your child’s healthcare team will carefully monitor your child to make sure he or she has the right amounts of water, salts and minerals in his or her blood. Your child may need an intravenous infusion, or a drip, to get fluids into his or her body.
Read more about monitoring in hospital
Your child’s kidneys may stop making as much urine as normal, or sometimes make none at all. His or her healthcare team will check how much your child is drinking and how much urine he or she is passing, to make sure he or she does not have too much fluid or too little fluid (dehydration). They may also weigh your child.
An intravenous infusion, or drip, may be used to get fluids into the body. A doctor or nurse will insert a cannula, a plastic tube, into your child’s vein. This is connected to a bottle or bag containing fluid, which drips through a tube into the vein.
Your child’s healthcare team will also check your child’s kidney function (how well his or her kidneys are working). They will test your child’s urine with a dipstick and check his or her blood pressure.
Nutrition
Changes to eating and drinking
Your child will need good nutrition (food) during this illness, and this will be carefully monitored, especially if his or her kidneys are not working properly. It is important that your child has enough calories (energy) and the right amounts of electrolytes, which are minerals such as sodium (salt), potassium, phosphate and calcium. Your child may also need to drink less fluid, such as water, squash and soft drinks.
Your doctor, nurse or a renal dietitian will give you more information about your child’s needs.
Help with feeding
Some children with HUS may feel sick (nausea), be sick (vomit) or have tummy pain, and they may not want to eat very much or anything at all. Your healthcare team can place a tube or an intravenous line to give feeds with calories and electrolytes, as well as water and medicines if needed.
- Enteral feeding gives feeds directly into the stomach. A nasogastric tube is a long, thin tube that is placed through the nostril, down the throat and into the stomach. It is inserted using special medicines so your child cannot feel pain or is asleep. If your child needs dialysis, the tube may also be placed at the same time as preparing for this treatment.
- Parenteral feeding gives feeds directly into the bloodstream. A ‘line’ is inserted into one of the large veins in your child’s neck – this is usually done under general anaesthetic so your child can sleep through the procedure.
Controlling blood pressure
Children with STEC-HUS may have high blood pressure, or hypertension. Their blood pressure will need to be controlled so it is in a healthy range.
If your child has hypertension, he or she may need to change what they eat and drink, and may need to take medicines.
Controlling blood sugar
A small number of children get pancreatitis, when the pancreas, which makes and releases chemicals that break down food, becomes inflamed. This can lead to diabetes, when there is too much sugar in the blood.
Some children need to take insulin, a hormone that is normally made by the pancreas, to help control the amount of sugar in their blood. This is given with a needle. This problem usually gets better over time.
Treating anaemia
Children with STEC-HUS get anaemia. The blood has fewer red blood cells or less haemoglobin, a substance that is in red blood cells. Because red blood cells and haemoglobin carry oxygen around the body, children with anaemia often feel weak and tired, and may look paler than usual.
Medicines
In some children, anaemia can be treated with folate (folic acid) medicines that help the body make more haemoglobin. These are usually taken by mouth.
Medicines for Children: Folic acid for haemolytic anaemia
Blood transfusion
Many children have more severe anaemia, and need a blood transfusion to receive healthy blood from a blood donor (another person who has given some of their own blood). A transfusion usually takes a few hours, and blood is given through a plastic tube in a vein. Children who have had a blood transfusion do not need to take folate medicines.
Dialysis for kidney problems
The kidneys do not work as well as normal during this illness – we say there is reduced kidney function. Most children develop acute kidney injury (AKI), where the kidneys quickly stop working properly. In some children, the kidneys get better over time.
However, about half of children with STEC-HUS need dialysis while their kidneys are not working properly. Dialysis uses special equipment or a machine to ‘clean’ the blood, removing waste products and extra water and salts, and sometimes adding important salts. Most of these children need this treatment for a short time only, but a few need it for longer.
Types of dialysis
There are two types of dialysis. Your child’s healthcare team will give you information so you understand the benefits and risks of each type, and the surgery that is needed to prepare for dialysis.
- Haemodialysis: your child is connected to a machine, usually for a few hours at a time, which cleans his or her blood. Your child will have a catheter (a long thin tube), or a ‘line’, inserted into one of the large blood veins in his or her neck – special medicines are used so your child does not feel any pain. Blood is pumped out of the body through a tube, into the machine, where it passes through an ‘artificial kidney’ called a dialyser, which is like a filter. The cleaned blood is then returned to the body through another tube. Blood is pumped out of and into the body quickly – only a small amount of blood is outside the body at any time.
- Peritoneal dialysis: your child’s peritoneum, which is the lining of the abdomen (tummy), is used to clean his or her blood. Your child will have a catheter inserted into his or her peritoneal cavity, which is a space around the organs in the abdomen. A special fluid (called dialysate) is put into the abdomen, where it sits for a few hours or longer, while the peritoneum filters the blood. The waste products, extra water and salts in the blood move into the fluid, and then this is drained out of the body. This can take place overnight, or several times a day.
Plasma exchange for cerebral HUS
Rarely, STEC-HUS affects the central nervous system, including the spine and brain – this is called cerebral HUS.
Plasma exchange (also called plasmapheresis) is sometimes recommended for these children. However, doctors do not yet have enough evidence to know whether this procedure can help children with cerebral HUS. The aim is to remove substances that may be harming the body. Using a special machine, some blood is removed from the body and separated into two parts – blood cells and liquid (plasma). The blood cells are returned to the body, along with the liquid part of blood that may come from a donor or may be made in a laboratory.
Read more about plasma exchange
Plasma is the liquid or watery part of blood. It helps carry blood cells, protein and other substances around the body.
- Plasma exchange is a procedure that removes blood from the body, separates the plasma and any harmful substances, and returns the blood, with a plasma substitute, to the body. Each plasma exchange takes about 2–3 hours and is done in hospital. Some children will need more than one exchange.
- A catheter, which is a large tube, is inserted into one of the large veins in the chest or neck. This is usually the same catheter that is used for haemodialysis. Your child’s blood is taken from his or her body through the catheter.
- Using special equipment, your child’s blood is separated into two parts: the plasma and any harmful substances; and the blood cells.
- Your child’s blood cells are added to a plasma substitute – either plasma or a protein called albumin from a donor, another person who has donated blood.
- This is then returned to your child’s body through the catheter.
- As blood is taken from your child and returned to him or her at the same rate, only a small amount of blood is outside his or her body at any time.
Your child’s doctor or nurse will give you more information about plasma exchange and how you and your child can prepare for it.
Questions to ask the doctor or nurse
- What treatment does my child need?
- How will the treatment help my child?
- 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?
Most children fully recover from STEC-HUS, and do not have long-term problems. It is usually a single episode, and so does not come back again. Children who need dialysis for more than two weeks are more likely to have long-term kidney problems.
Risk of death
There is a small risk of death with this disease. Reports indicate that 2 or 4 children in 100 with STEC-HUS die. This usually happens shortly after they first develop the disease.
In a recent UK study 7 out of 389 children with diarrhoea-associated HUS died during the acute illness (when the child first became sick with HUS). They were more likely to die when other parts of their body, such as the brain, were severely affected. The study showed that the survival rates had improved since an earlier study.
Follow-up
Your child will need to have follow-up appointments at the hospital. If your child needed dialysis, he or she may need to continue going to these throughout their life. It is important to go to these appointments, even if your child seems well. You will also have the opportunity to ask any questions.
At these appointments, your child may have his or her height and weight checked, and a physical examination.
Blood pressure
Your child will need to have blood pressure measurements – at first, very often, and later about once a year. About a quarter or a third of patients who have had STEC-HUS have high blood pressure (hypertension) and this will need to be controlled.
Blood tests
Your child may need blood tests to check for the amount of protein and other substances in his or her blood, and measure his or her kidney function.
Urine test for protein
Your doctor will do urine tests to check whether there is more protein in your child’s urine than usual (proteinuria).
If there is proteinuria, this may be a sign that your child’s kidneys are not working as well as they should. Your child may need to take a medicine to try to reduce the amount of protein in his or her urine – the medicine may be an angiotensin-converting enzyme inhibitor (ACE inhibitor) or angiotensin-II receptor blocker (ARB).
Impact on your child and family
Children who make a full recovery from HUS can usually do all the things that other children their age do. They should be able to go back to school or nursery, 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.
Long-term problems
Chronic kidney disease
A few children will have long-term problems with their kidneys. Their kidneys stop working as well as they should – this happens slowly, often over many years. This is called chronic kidney disease (CKD). These children will need further, specialist treatment in the future. If your child has CKD, you and your family will learn more over time about how to help manage the condition, and what to expect.
Other long-term problems
Some children have complications in other parts of their body. Many recover from these, but they may need follow-up – a few children will have long-term problems, including:
- diabetes (higher amount of sugar in their blood) – they will need to take insulin as a medicine
- colitis (when the colon, or bowel, gets inflamed)
- cerebral HUS (affecting the central nervous system, including brain) – including seizures (convulsions or fits), problems with vision, or paralysis (when part of the body cannot move).
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.
Resource
HUSH (Haemolytic Uraemic Syndrome Help) UK PO Box 159 Hayes UB4 8XETel: 0800 731 4679 www.ecoli-uk.com