Bleomycin sclerotherapy

Information about bleomycin sclerotherapy, why it might be suggested and what to expect when your child comes for treatment at Great Ormond Street Hospital (GOSH).

Bleomycin is one of several different medicines that can be used for sclerotherapy. This leaflet only provides information about bleomycin sclerotherapy – we have another leaflet available about sclerotherapy in general. This is available from your clinical team, the PALS office or our website.

Sclerotherapy involves injecting a medicine into cysts. The medicine is injected directly into the cysts, irritating them and encouraging them to scar and shrink. Sclerotherapy is carried out in the Department of Radiology by a doctor (radiologist) who specialises in using imaging to carry out procedures.

Bleomycin sclerotherapy is a specific type of sclerotherapy. It is usually suggested as a treatment for certain types of lymphatic malformations such as microcystic lymphatic malformations, or when standard sclerotherapy has failed.

A lymphatic malformation is an abnormality of the lymphatic system that forms a cyst filled with a clear fluid similar to the fluid in a blister. These malformations are often congenital (present at birth). The cysts of the lymphatic malformation have no useful purpose and can cause problems if not treated.

The walls of the cysts are quite thin and contain little blood vessels. Occasionally the blood vessels can break and cause a clot to form inside the cyst. This can lead to sudden swelling and bruising of the area. This can be painful, and the appearance of the bruising can be upsetting. The cysts can also become infected. Microcystic malformations contain millions of very small cysts and usually cause problems because they are bulky, unsightly, or get infected.

Several medicines are used for sclerotherapy. Bleomycin is just one of those options. Most sclerotherapy medicines act by causing irritation or inflammation of a malformation, followed by scarring.

Bleomycin is an antibiotic agent that also causes cell breakdown or destruction, so that vascular malformations slowly become less bulky. Because it doesn’t cause any irritation of the malformation, it is often less painful, and it causes very little swelling compared to other agents used for sclerotherapy.

It takes longer to work than most other sclerotherapy medicines, and it isn’t effective in every case. Bleomycin may be better at shrinking microcystic lymphatic malformations than the other medicines available. It may be useful for treating malformations in areas where swelling may be dangerous, such as near the eye or airway.

Bleomycin is a medicine that has been used for many years to treat other conditions. In a very few cases, when it has been used in much higher doses and has been injected straight into the bloodstream, patients have developed some scarring of their lungs several months later, meaning they can’t take as big a breath in. Sometimes this is permanent. Doctors think this is extremely unlikely to happen in children where bleomycin is being used for sclerotherapy, as the doses are much, much lower and the medicine is not given in the same way.

Very rarely, bleomycin can cause some discolouration of the skin or nails, or make some hair fall out. This usually gets better with time. We think that the skin is more likely to be affected if there are monitoring leads or plasters stuck to the skin at the time of treatment. Therefore, during your child’s procedure we will be very careful to either put these on parts of the skin that are less noticeable, such as the sole of the foot, or use alternative bandaging.

You will already have received information about how to prepare your child for the procedure in your admission letter. You may need to come to GOSH before the procedure so that your child can have a pre-admission assessment to check that they are well enough. This appointment may involve taking blood samples and other tests.

Your child needs to be fasted for the procedure for the general anaesthetic. If your child takes regular medication, please speak to your child’s team about when to stop these before the procedure.

As a general rule:

As a general rule:

Food and milk:

• Breast-fed babies- can have their last feed three hours before the procedure. Breast milk is digested faster than solid food or formula.
• Bottle-fed babies and children- can have their last milk feed, food or milk drink, six hours before the procedure. They should not have any food or milk after this time.

Water:

• All babies and children can have a drink of water (but no other fluids), until one hour before the procedure.

It is equally important to keep giving your child food and drink until those times to ensure they remain well-hydrated and get adequate nutrition. This may involve waking your child in the night to give them a drink which we recommend.

Please follow these instructions carefully, otherwise your child’s procedure may be delayed or even cancelled.

Your child will be admitted to a bed on a ward.

The person bringing your child to the procedure should have ‘parental responsibility’ for them. Parental responsibility refers to the individual who has legal rights, responsibilities, duties, power and authority to make decisions for a child. If the person bringing your child does not have parental responsibility, we may have to cancel the procedure.

An anaesthetist will visit to talk to you about your child’s anaesthetic. The specialist performing the procedure will explain the procedure in more detail, discuss any questions you may have and ask you to sign a consent form giving permission for your child to have the bleomycin sclerotherapy. If your child has any medical problems, please tell the specialists. Contrast liquid (which shows up well on X-rays– is used during the procedure. This is removed from the body through urination (peeing), so please tell the doctors if your child has any kidney problems.

You and your child will then be brought to the Interventional Radiology (IR) suite within the X-ray department to have the procedure.

Once your child is under general anaesthesia (asleep), the radiologist will check the malformation using an ultrasound scan and sometimes X-rays.

Using the ultrasound scan as a guide, they will insert a small needle through the skin into the malformation. They will then inject the medicine through the needle. Finally, the radiologist removes the needle.

No stitches or dressings are needed – you will only be able to see a few pinpricks in the skin.

Your child will return to the ward after they have recovered from anaesthesia. Some children feel sick and vomit after the administration of a general anaesthetic. Your child may have a headache or sore throat or feel dizzy, but these side effects are usually short-lived and not severe. Your child can start eating and drinking as normal once they feel like it.

The specialists will come to check your child’s progress on the ward and will give you some information about what they have done during the procedure.

Any bruising and swelling of the malformation will only last for a few days. Some parents say that the discomfort and swelling is more noticeable on day 3 or 4 after treatment than straight after the procedure. This is normal. Children’s pain relief medicine is usually enough to deal with any pain.

You will be able to go home once the doctors are happy that your child is recovering well. The swelling should start to go down after a week or two. They should be able to go back to school after a few days.

You should call the hospital if:

• Your child is in a lot of pain and pain relief does not seem to help.
• The treated area is unusually hot, red and painful, and your child is generally unwell with a high temperature or not eating or drinking as usual.

You can call the ward by calling the GOSH switchboard and asking for the ward your child was discharged from.

Telephone: 020 7405 9200

If you are unable to get through, please call NHS111 by dialling 111.

You will get an appointment to come back to the hospital so the doctors can check on your child’s progress and decide whether the treatment has worked.

The specialists will tell you if your child needs further sclerotherapy procedures and if so, when. Your child might need to have a routine outpatient appointment a few weeks afterward, before this decision is made. We will send you a letter with the planned date of the outpatient appointment or next treatment session.

Your child might need several sclerotherapy procedures to reduce the malformation. As sclerotherapy causes swelling and discomfort, it is safer to carry out several smaller treatments limiting the effects each time. Sclerotherapy will not ‘cure’ the malformation, but it should shrink it significantly. Occasionally children need to have further sclerotherapy as they get older and some may need surgery to improve the final result.

Your child will be having sclerotherapy under general anaesthesia. Every anaesthetic carries a risk, but this is extremely small.

The procedure also involves X-rays. The levels that are used are low dose and therefore low risk. If you have any concerns regarding the use of radiation, please discuss this with the person performing your procedure beforehand.

Sclerotherapy can also cause:

• Irritation and swelling – the area treated may look a little more swollen than usual after the procedure. This swelling is usually minimal.
• The area may feel bruised and sore for a few days, but your child will have pain relief.
• There is a slight risk of infection after the procedure. Your child will need a short course of antibiotics if this happens. We will give you a letter to take home, explaining to your family doctor (GP) what to prescribe for your child if they get an infection.
• There is a slightly higher risk than usual of the malformation developing blood clots inside. This causes sudden swelling and bruising, which may be uncomfortable. If this happens, the bruising will slowly settle. It will not affect how well the treatment works.
• There is a very small chance that it will also irritate the skin over the venous malformation if it goes too close to the skin surface. This is more of a risk where the skin is very blue or in delicate areas, such as eyelids or lips.
• The skin may develop blisters or develop sore patches. If this happens, you should contact your doctor. Usually, any skin blistering is minor and heals in a few days without leaving a scar. Very rarely, the blisters are bigger and need special dressings to make them heal, which may leave a scar. This may require further treatment in the future.
• The medicine may also irritate any nerves near the treated area, which can cause numbness, tingling or ‘pins and needles.’ Nerve damage is very rare and if it happens, is usually temporary. Usually, the area recovers fully but occasionally it can be permanently affected.
• It can also affect the muscles in the area, causing spasms or weakness, although this usually improves in a few days or weeks.

Sclerotherapy works for most children but not all of them. Experience helps us understand which malformations are more likely to respond. If the doctors feel that the first sclerotherapy treatment has not been very successful, they might suggest surgery, perhaps in combination with further sclerotherapy.

As the procedure involves the use of X-rays, legally, we have to ask anyone over the age of 12 whether there is any chance they might be pregnant. We will also ask for the first date of their last period (if started). This is to protect babies in the womb from receiving unnecessary radiation and any effects of the bleomycin.

Sclerotherapy seems to be the best treatment option for many malformations as it carries lower risks than open surgery. It does not cause any external scarring, and the malformation does not appear to grow back after treatment. However, as every child with a malformation is different, sclerotherapy may not always be the best option. Sometimes a combination of sclerotherapy and surgery might be suggested. Your doctor will explain the options for treatment suitable for your child.

If you have any questions, please speak to you child’s doctor or nurse or call Interventional Radiology:

Telephone: 020 7405 7943

You can also contact us through MyGOSH.