Children and families |
Peritoneal dialysisThis leaflet contains information about peritoneal dialysis (PD) at home. It includes information about what happens next and gives you an idea of how our training programme works. The management of PD care is specific to each patient and varies according to your child’s needs and underlying condition. This booklet will not answer all your questions but covers the points raised most often by parents of children starting PD. Please ask us any questions or concerns. It may be useful to keep a notebook and write questions down as you think of them. You will receive another booklet that has detailed step-by-step instructions on how to set up the dialysis machine and other practical issues. This will be used when your child is admitted to Great Ormond Street Hospital for training. Contents
What is PD?Dialysis is needed when a child’s kidneys stop working properly. This can be for several reasons. Your child’s doctor will have discussed with you what has happened in your child’s case. If you would like more information on this, please see our separate leaflet on kidney failure. Dialysis does the job that is normally performed by the kidneys - that is, it removes waste products from the blood and excess water from the body. There are two methods of dialysis: peritoneal dialysis, where a catheter is inserted into the abdomen, and haemodialysis, which involves filtering out waste by passing blood through an artificial kidney machine. This leaflet explains peritoneal dialysis. When your child starts peritoneal dialysis you will have a lot of new skills to learn. Your child will also need to be prepared for dialysis, both physically and mentally. Peritoneal dialysis works by using the lining of the abdomen (peritoneum) as a filter. There are three stages to a dialysis cycle (or exchange):
Preparing for PDOne of the PD nurses will come to see you at home to discuss the practical issues of home dialysis. For instance, where your child will have dialysis, where the machine will go, where you will set up the dialysis and storage of fluid and equipment. It is also a time for you and your family to ask practical questions, discuss the implications of PD and get used to the idea of PD at home. The home visit ideally occurs before insertion of your child’s dialysis catheter. However, sometimes this will take place following the event, for instance, after insertion for acute illness. The day and time of the home visit will be negotiated with you and the PD nurse specialists. What is a PD catheter?The dialysis catheter is a soft tube that is put into the peritoneum (in the abdomen) under general anaesthetic. The operation normally takes place on a Tuesday afternoon and your child will be admitted to Victoria Ward on the morning of the day before. The operation itself lasts between one and two hours. You will be given more detailed information about the operation and will have the opportunity to speak to the nurses, doctors, anaesthetist and play specialist. After the PD catheter has been insertedYour child will come back from the operating theatre with a dressing over the site and will be given pain relief as discussed with you before the operation. The new catheter will be ‘flushed’ when your child comes back to the ward. This involves the catheter being attached to the dialysis machine so that fluid is flushed in and out of the peritoneum. This is done to stop the line blocking and usually lasts between two and six hours. Children often stay in hospital for two to three days but this can vary from child to child, depending on his or her pain level, mobility and kidney function. Before you are discharged home, the nursing staff will explain how to look after the catheter and what to do if you have problems at home. The checklist below should be completed before you go home. For the following few weeks, before starting dialysis, the dressing must be left on covering the exit site. Do not remove or change the dressing. It will be changed at your weekly clinic appointment. If the dressing comes off or is soiled, please contact the clinic. The PD nurse specialists will also flush the catheter during the clinic appointment but this flush does not take long. If your child has any problems, such as pain, a high temperature or catheter problems or is at all unwell, you must contact the PD nurse specialists or Victoria Ward immediately. Possible problems with the PD catheterLine contamination If the dark blue end of the PD catheter becomes exposed, for example, if the cap comes off accidentally, or you touch it by mistake, you should:
Line breaks or hole in line or line is leaking If you notice that there is a problem with the PD catheter itself, for example, it has developed a hole, the line is leaking or the line extension becomes detached, you should:
PeritonitisOne of the potential problems with your child’s dialysis is the risk of peritonitis. Peritonitis is an infection affecting the lining of the peritoneum (the location of the PD catheter). It is very important that you are aware of the signs and symptoms of peritonitis so that your child can be treated as soon as possible. Peritonitis can make your child become very unwell very quickly so it is essential that you report any signs and symptoms immediately, so that your child can be admitted for monitoring and to receive antibiotics. Signs of peritonitis During your training, you will be given more information about peritonitis, learn how to check for symptoms and be taught what to do if your child has any of the symptoms. When your child is established on PD, you will automatically check for symptoms of peritonitis as part of your routine. The main symptoms of peritonitis are: Cloudy dialysis fluid
Pain
Temperature
Nausea and vomiting
Feeing unwell
If your child has any of these signs, you must telephone the PD nurse specialists or Victoria Ward immediately, regardless of the time of day or night. You will be given advice on what action to take. Remember that peritonitis can mean that your child becomes very unwell very quickly. In severe cases, the dialysis catheter has to be removed. If you have any worries, please contact us. The sooner we know, the sooner we can act and start treatment. PD and fluid balanceFluid overload Fluid overload means that your child has too much fluid in his or her body, which they cannot get rid (excrete). This may be because they have drunk too much fluid or they may have not got rid of enough through passing urine or dialysis. If you think your child may have fluid overload or has any of the symptoms below, please contact us.
Dehydration Dehydration means that your child does not have enough fluid in his or her body. This may be because they have not drunk enough fluid or they may have got rid of too much fluid through passing urine or dialysis. If you think your child may be dehydrated or has any of the symptoms following, please contact us.
When does PD begin?After insertion of the catheter, ideally the plan is to ‘rest’ the catheter for three weeks to allow it to heal. However, there are times when your child’s blood results indicate the need to start dialysis earlier. When does training begin?This depends on your child’s condition and the availability of PD nurse specialists to train you. The main parents or carers responsible for carrying out dialysis will be trained first. Other family members or carers can be trained at a later date if appropriate. Before your child is admitted to the ward for training, you will be given the opportunity to spend a day at the Baxter Renal Educational Centre (BREC). This is a dedicated training centre where specialist nurses can start some initial hands-on training on the HomeChoice Pro® dialysis machines. This is an excellent opportunity to start learning about the HomeChoice Pro® machine and to practise with the equipment. We strongly recommend that you take up this opportunity. What happens during training?You will work with the PD nurse specialists and ward staff so that you feel confident and have a good understanding of your child’s needs on PD. Some of the things you will learn include:
Training will involve you and your child being admitted to Victoria Ward for approximately seven to ten days. Admission for training is usually on a Monday and your child will start dialysis that night. During this time you will be expected to stay overnight so you can gain experience and become comfortable with your child on overnight dialysis. You will also be expected to be available for teaching during the day. The importance of this is to ensure that you have the opportunity to understand and learn the practical skills that you will need to carry out PD at home. The aim is that you will be attending to all your child’s care, initially with support and then independently before you are discharged home. What happens when we go home?Once your child is established and stable on dialysis, plans for discharge will be made. This will only take place once you and the medical and nursing teams are confident that you are fully trained and able to care for your child’s dialysis independently. On the day of discharge, one of the PD nurse specialists will meet you at your home to support you while you set up the dialysis machine for the first time. When you are at home, you will be seen in the dialysis clinic regularly, weekly at first, then every two weeks and eventually every month. Your first appointment date will be given to you before you go home. The clinic is held every Monday from 9.30am to 1pm in the Royal London Homeopathic Hospital (RLHH) next door to GOSH. Please report in to the receptionist on Floor 1. Your child will have blood taken and his or her catheter exit site swabbed and dressed, before seeing the doctors, PD nurse specialists and dietitians to address any concerns or make any changes needed. Please bring your dialysis sheet and HomeChoice Pro® card with you to each clinic appointment. We appreciate the commitment that is involved both for training and carrying out dialysis at home. Please talk to us if you have any specific concerns or worries regarding your child’s dialysis. Remember that you can access 24-hour support by phoning the dialysis clinic or Victoria Ward out of hours. If you have any questions, queries or concerns, please ring us. The team are here to support you and help you throughout your training, transition home and ongoing management of your child on PD. PD and medicationMost children with chronic renal failure who are on dialysis will need to take a number of medicines. Make sure that you understand exactly how and when to give your child medicines before you leave the hospital or pharmacy. If you have any questions, please ask your doctor, nurse or pharmacist. Most medicines now come with a patient information leaflet. This gives information about what the medicine is for and how it should be taken. It will also list all of the reported side effects, although this does not mean that your child will get these side effects. Sometimes medicines are used for conditions not listed in the patient information leaflet and/or at different doses. The leaflet may state that a medicine should not be used for children, although its use in children may be well established. If you are concerned about any medicine prescribed for your child, please speak to your doctor, nurse or pharmacist. The medicines your child will need to take may include: Phosphate binder The dietitian will give you advice to help your child’s dietary phosphate intake. They will probably also need to take a phosphate binder such as calcium carbonate, calcium acetate or a newer one called sevelamer (brand name Renagel®). They work better at binding the phosphate in food or drink if they are taken before a meal or feed. If this is not possible, have your phosphate binder during the meal or feed. Do not give afterwards, as they will not work properly. If your child cannot chew or swallow them, the tablets can be crushed and mixed with a little water or added to feeds if mixed thoroughly. Calcium carbonate 250mg dispersible tablets are a ‘special’ medicine, which means that your local pharmacy will not usually keep them in stock so will have to order them especially for your child. If your child cannot chew or swallow them, the tablets can be crushed and mixed with a little water or added to feeds if mixed thoroughly. Iron preparation This is available as tablets (ferrous sulphate or ferrous fumarate) or syrup (brand names Fersamel® or Sytron®). Iron preparations should not be taken at the same time as the phosphate binder, as the absorption of the iron is reduced. Please leave an interval of about an hour. Epoetin (EPO) This is a replacement for the naturally occurring hormone erythropoietin, which would have been produced by the kidneys. It stimulates the body to produce new red blood cells. Epoetin is given as an injection under the skin (subcutaneously) once or twice a week, using either a prefilled syringe for children under three years or an injection pen. You will be shown how to give epoetin or your family doctor or community nurse may give it to your child. Always keep epoetin in the fridge. Sometimes a home delivery of this medicine can be arranged. Alfacalcidol (1 alpha) Vitamin D, which is required for healthy bones, is usually changed by the kidney to its active form. In renal impairment, the active form alfacalcidol is given instead. It is available as a capsule or as oral drops. Antihypertensive agents If your child has high blood pressure, an antihypertensive agent will be used. Nowadays, we try to give medicines that can be given once a day, such as enalapril, amlodipine or atenolol. When they are not available as a liquid, tablets can be crushed and mixed with a little water. If your child is prescribed nifedipine, this will be given as a modified or sustained release preparation. We do not give 9 nifedipine as capsules as your child’s blood pressure may fall too quickly. Your child may also be prescribed furosemide, a diuretic (water tablet). Sodium bicarbonate or sodium chloride Capsules of 500mg (6mmol bicarbonate) are available but the solutions must be specially prepared. These medicines will be prescribed in mmols. Remember that the number of mmols will be given rather than mls as sometimes a different concentration of sodium chloride may be made. Sodium bicarbonate 1mmol in 1ml solution is not very stable and so should not be mixed with any other medicines. Give it just before or just after the other medicines. If sterile solutions are supplied, once opened they must be stored in the fridge and thrown away after seven days. Vitamins The dietitian will decide whether your child needs additional vitamins depending on your child’s dietary intake. See Diet and PD section for further information. Folic acid This helps in the production of red blood cells and may also help keep your child’s blood vessels healthy. It is available as tablets or syrup. Laxatives Your child may also need to take a gentle laxative, such as lactulose or senna to prevent constipation. Important information about your child’s medicines
Diet and PDThe team of specialised renal dietitians work closely with all families. Infants and children on PD often have a decreased appetite. Your dietitian will help to make sure your child has the best nutritional intake possible to maximise their growth and development. The dietitian will review your child’s intake, weight, height and blood results and your child’s diet or feed may need to be adjusted based on this. Energy Your child’s energy (calorie) intake may need to be increased. Your child will absorb glucose from the PD fluid and this will be taken into account when working out your child’s requirements. Protein During PD, protein is lost across the peritoneum and therefore your child may need to have extra protein from food and/or feeds or supplement drinks to make up for this. Phosphate This is not cleared well on PD and your child’s intake of phosphate-containing foods will need to be controlled. If you or your child is unsure how much phosphate they are allowed check with your dietitian. Salt It may be necessary to reduce your child’s salt intake if your child has high blood pressure. Your dietitian will advise if this is necessary. Vitamins Some vitamins are lost across the peritoneum during PD. Your child may require a supplement to replace these losses. If your child is already taking a supplement drink or feed, they may be receiving enough of these vitamins. It is important for your dietitian to know if your child is taking any multivitamin or supplement other than those prescribed, as these may be harmful. If you want to discuss your child’s diet or have any queries or concerns, the dietitians are available in the PD clinic every Monday or you can contact them by phone on the number inside the front cover of this booklet. Family supportWe have a large psychosocial team that works closely with families who have children on dialysis. You will probably have met some of the team already. They may contact you directly but you can also ask to speak to any of them whenever you want and we can help to arrange this for you. They are here to support you and your family. The members of this team include a ward counsellor, psychologist, family therapy, social workers and family support workers. In addition to this team, we have a full time play specialist on Victoria Ward, who works Monday to Friday. You will meet her during you stay on the ward but you can also ask to meet her before your admission. She has a teddy with a PD catheter that you and your child can look at and play with before the operation. This will give you all the opportunity to know what it looks and feels like. You can ask her any questions about the operation or going home on dialysis. The play specialist also looks after the playroom on the ward and will make sure your child is not bored during his or her stay. You can ask her for things to do, such as games, videos/DVDs, computer games or arts and crafts and so on. There is also the Activity Centre and School, which your child may be able to visit. Frequently asked questionsDoes my child need to have dialysis every night and how long will it last? Do I have to tell my child’s school? Can my child play sports? Will my child feel tired on dialysis? Are there any other families I can talk to? We have a pet, is that OK? The dialysis equipment is quite heavy, should I be lifting it in a certain way?
General back care advice:
Can we still go on holiday? Will dialysis hurt? Are my child’s medicines free?
How do I apply for financial support? What is DLA? Your child must be at least three months old before receiving DLA, however, you can put in the claim pack before this date to ensure that you receive the benefit straightaway. Am I entitled to DLA? Why claim DLA? How do I claim DLA? Alternatively, you can collect a claim pack from the Social Work department. However, the claim pack will not be date stamped so if successful, DLA will only be paid from the date the form is received by the Benefits Agency. Help with filling in the form
Other sources of financial support There may also be charities or support organisations specific to your child’s condition that can offer assistance. For further information, please get in touch with Contact a Family on their free phone number 0808 808 3555 or visit their website at www.cafamily.org.uk. Ref: 2008F0196 © GOSH Trust October 2008 This page was last updated on 6 March, 2009 |
UCL Institute of Child Health
Great Ormond Street Hospital for Children NHS Trust
