This page explains about a home infusion of desferrioxamine mesilate (Desferal®) using a balloon pump and what to expect when your child comes to Great Ormond Street Hospital (GOSH) to have this procedure.
What is desferrioxamine?
Desferrioxamine is a medicine that removes iron from the blood when too much has built up after blood transfusions.
People with beta thalassaemia major and some with sickle cell disease need regular blood transfusions.
Blood contains lots of iron – more than the body needs – so having regular blood transfusions will increase the amount of iron in the body. The body is unable to get rid of extra iron naturally so this medicine is needed. It can be dangerous if too much iron builds up in the body, particularly to the heart, liver and hormone system. This build up can cause long term and life threatening damage if it is not treated.
The medicine works by binding with the iron in the blood so that it can be removed in urine (wee) and faeces (poo). The effect of the medicine increases if it is given regularly and at a slow rate, so it is important to follow the treatment plan given by your team.
Why does my child need desferrioxamine?
The dose prescribed and the frequency of infusion usually reflects the degree of iron overload and the size of your child.
Your child will have regular blood tests called ferritin tests to show the amount of iron in the body. The results are shown in nanograms per millilitre (ng/ml) and normal levels are under 300ng/ml. When ferritin levels reach around 1000ng/ml, treatment needs to start.
While your child is receiving treatment, his or her ferritin levels will be monitored regularly and other tests may be undertaken, such as scans, to measure the amount of iron in the body.
How is desferrioxamine given?
It is given as an infusion under the skin (subcutaneous) using a ready-to-use needle and tube set connected to a pre-filled balloon pump. The infusion is given slowly usually over a period of 10 to 12 hours, usually overnight. Your child will have the infusion up to seven nights a week, depending on his or her needs. We will teach you how to give the infusions at home and if your child is old enough, he or she can learn as well.
Initially, your child will start on a small dose, which is then increased according to ferritin levels.
Instructions for setting up the infusion follow below.
Vitamin C (ascorbic acid) tablets are given alongside the desferrioxamine infusion to increase its effect and therefore the amount of iron that can be removed from the body. It is important to only give the dose prescribed by your child’s doctor. Taking too much Vitamin C could increase the damage caused by excess iron. Your child should take the Vitamin C tablets at roughly the same time as starting the infusion on each occasion, starting when they have been having the desferrioxamine for two to four weeks. They do not need to be taken on the days when your child is not having the desferrioxamine infusion.
What are the side effects?
Dark brown urine
Your child’s urine may turn a dark brown colour while on treatment. This is a good sign that excess iron is being removed from the body and that the medication is working.
Local skin reaction
Pain and swelling at the infusion site is common and usually gets better without treatment. If it continues for longer than 24 hours, please contact your team for advice. Rotating infusion sites (see later section for details) will reduce the chance of reactions occurring.
Yersinia infection
This is a rare complication of treatment. If your child develops diarrhoea and fever, please contact the hospital.
Mild allergic reaction
Itching, watery eyes, sneezing may occur. If so, please contact your team as your child may need an antihistamine medicine and desferrioxamine will be discontinued
Severe allergic reaction
Some people develop a severe allergic reaction to desferrioxamine, although this is very rare. Signs of a severe allergic reaction include skin rashes and itching, high temperature, shivering, redness of the face, a feeling of dizziness or a headache, as well as shortness of breath or chest pain. If you are in hospital and your child shows signs of a severe allergic reaction, call a doctor or nurse immediately. If you are at home and your child shows signs of a severe allergic reaction, stop the infusion and call an ambulance immediately.
Important information
- Keep all medicines in a safe place where children cannot reach them.
- You will be told how to store the desferrioxamine infusions. Most can be kept at room temperature. However, some types (those infusions to be given over 48 hours or five days or combined with hydrocortisone) should be stored in the fridge at a temperature of 4°C. If your child is travelling outside the UK to a hot country, the infusion should also be stored in the fridge.
- Take the infusion out of the fridge for at least an hour before giving to your child to let it reach room temperature.
- If your doctor decides to stop treatment with desferrioxamine or the medicine passes its expiry date, return any remaining medicine to the supplier company. Do not flush it down the toilet or throw it away.
- If you forget to give your child a dose and it is within a few hours of when the dose was due, give it as soon as you remember. Otherwise, do not give this dose but wait until the next dose is due. Do not give a double dose.
Rotation of infusion sites
One important factor in making subcutaneous infusions less painful and reducing irritation at the infusion site is to rotate the position on the body where you give the infusion. There are several areas of the body suitable for giving subcutaneous infusions, shown on the diagram. As a general rule, suitable areas are those with some fat below the skin, so the thighs and abdomen tend to be most suitable in children. As your child grows, other areas may become suitable as well, such as the upper arms but these vary from child to child.
In the downloadable PDF version of this information, there is a site rotation chart for you to use to make which infusion sites you use on which day. Work out a pattern for how you will use each area. We tend to suggest that you give an infusion in one area on the first day and another area of the body on the second.
For example, Debbie needs to give her son Nathan one infusion each day. On the first day, Nathan chooses to have the infusion in his abdomen so Debbie marks one abdomen square on the chart with the date. On the second day, he chooses to have the infusion in his left thigh, so Debbie marks off the relevant square. On the third day, Nathan chooses his right thigh for the infusion. On the fourth day, Debbie gives him the infusion in his abdomen again but in a different square to the one she used on the first day.
Some parents find that it helps to put a small circular plaster over the infusion site to mark it as a reminder for the next time. It is important to rotate the infusion sites each time. Infusing the medicine into the same area all the time will cause a fatty lump to form. While these are not dangerous in themselves, medicine will be absorbed more slowly through them.
The infusion equipment
Desferrioxamine is given as a subcutaneous infusion using a ready-to-use needle and tube set previously known as a Thalaset®. The tubing is made from a type of plastic that is less likely to cause allergic reactions and you do not usually need an extra dressing to secure the needle. Some children find a different sort of needle and tube set called a ‘butterfly’ more comfortable.
Using local anaesthetic cream
If your child prefers, local anaesthetic cream can be applied to the chosen infusion site beforehand according to the instructions on the tube. It is kept in place using an adhesive plastic dressing or polythene wrap and a bandage. It needs to be covered to allow time for the anaesthetic to be absorbed and effectively numb the skin. If your child would like to use local anaesthetic cream, please discuss this with your team who can prescribe it for you.
Giving the infusion
- Collect together all the equipment you will need:
- A clean work surface or tray
- Your site rotation chart
- Sterile alcohol wipe
- Pre-filled balloon pump
- Thalaset® or butterfly infusion set
- Tape
- Sharps disposal box
- Prepare the work area and clean with the alcohol wipe
- Open all the equipment packages carefully
- Wipe the local anaesthetic cream from your child’s skin
- Wash your hands thoroughly with soap and water
- Attach the infusion set to the balloon pump, making sure it is screwed on firmly
- Allow the tubing to fill up to the end by releasing the clamp, allowing the fluid to flow along the tubing until it reaches the end of the needle
- Close the clamp
- Remove the sticky backing from the dressing and the protective cover from the needle
- Lift the skin in the chosen injection area between your thumb and index finger
- Insert the needle at a 90° angle to the skin surface – like putting a drawing pin into a board.
- Press the dressing around the needle firmly to make sure the needle stays in place, adding additional tape if required
- If you are using the alternative needle set, or butterfly, you will be shown how to put this in under the skin
- Release the clamp to start the infusion
- Check the infusion site for any leakage, which may show that the needle has been displaced
- Once the infusion has been completed, remove the needle and dispose of both the pump and infusion set in the sharps box.
If you have trouble removing the end cap
- Using a pair of stainless steel clamps (supplied by the company) grasp the end of the infusion device. Do not clamp the plastic tubing as this will damage it.
- With your free hand, unscrew the end cap.
In most cases, this method will loosen the end cap sufficiently so that you can remove it. If you have any problems, please call your nurse.
Arranging medicine and supplies
The pump and supplies including tape, sharps bin, even a fridge if required, are supplied to you from an independent company. Once your child’s team has written up the prescription and contacted the company, they will liaise with you directly about delivering the medicine and supplies.
It is important that you notify the company or the team looking after your child if you are planning a holiday.
Last reviewed by Great Ormond Street Hospital: May 2010
Ref: 2010F0985 © GOSH Trust May 2010
Compiled by the Clinical Nurse Specialist for Sickle Cell and Thalassaemia, Community Children’s Nursing Team, North Middlesex University Hospital in collaboration with the Child and Family Information Group at GOSH
This information does not constitute health or medical advice and will not necessarily reflect treatment at other hospitals. If you have any questions, please ask your doctor. No liability can be taken as a result of using this information.
