Who is the leaflet for? What is its aim?
This leaflet has been developed to provide advice and information to parents and carers administering propranolol to infants in order to reduce the appearance of his/her haemangioma.
What is a haemangioma?
Haemangiomas are soft tissue growths connected to the circulatory system and filled with blood. Their appearance depends on location. If they are on the surface of the skin they look like a ripe strawberry, if they are just under the skin they present as a bluish swelling. Sometimes they grow in internal organs such as the liver or larynx (airway).
How did my child get a haemangioma?
They are formed during pregnancy and most commonly they are not present at birth, but appear during the first few weeks of life. They are often misdiagnosed, initially, as a scratch or bruise, but the diagnosis becomes obvious with further growth. Sometimes they present as a flat red or pink area.
What is propranolol?
Propranolol is a type of medication called a beta blocker that is used to treat high blood pressure in adults. Its use to treat the haemangiomas of children has been used for > 10 years and it has been used to treat children with heart conditions for a long time.
These will vary depending upon where on your child’s body their haemangioma is. However, generally speaking, the main benefit your child will experience from taking this medication is to reduce the size of their haemangioma.
Is it safe?
All possible risks will be explained to you in detail prior to your child commencing propranolol therapy.
They include (in order of frequency):
- Low pulse rate (bradycardia)
- Low blood pressure (hypotension)
- Constriction or spasm of the tissue in the lungs (bronchospasm)
- Low blood sugar level (hypoglycaemia)
- Cardiac conduction disorder (an altered pattern in the way the heart works)
- Narrowing of the blood vessels in the limbs (vasoconstriction; which may mean that your child’s hands and feet feel cold)
- Weakness and fatigue
- Sleep disturbance
Small haemangiomas maybe suitable for treatment with a topical gel please discuss this
with the dermatology team whether this would be suitable for your child.
For further education regarding Propranolol for parents the following American resource
What happens next?
Preparation before commencing treatment
Following referral for treatment by your child’s consultant, arrangements will be made for your child to be reviewed by a paediatric cardiologist in clinic 6.
After the decision has been made, in conjunction with yourself, to start a propranolol treatment regime arrangements will be made to either start the medication at home in smaller doses (this is depending on clinical criteria) or for your child to be admitted to Ward F3 (a children’s ward) to commence their medication. The propranolol medication is administered to your child orally in a suspension form (like Calpol).
Depending on your child’s medical history the medication maybe able to be commenced at a low dose starting at home. If your child does not meet the criteria they will need to be admitted to hospital for the five-six hours on the first day of treatment and for a further five-six hours, around a week later, when the dose is doubled. It is important that you remember to bring your supply of propranolol as we will use your medicine during the admissions.
In between these two admissions; and for all subsequent dose increases, you administer the medication yourself at home. Investigations prior to the commencement of medication will involve recording your child’s weight, blood pressure, a physical examination, a photograph of your child’s haemangioma, blood tests and an echocardiogram (a scan of your child’s heart to assess its structure and function) and a 12 lead ECG (electrocardiogram). These may be conducted either on the day of, or during the week before, admission.
The medication will need to be collected from Rowlands pharmacy (near Clinic 6) before commencement of the medication.
How long will my child need this medication for?
Home treatment regime
Days 1-4: 0.5mg/kg/day of propranolol divided into three doses (6 kilogram child would receive a dose of 1mg three times a day) to be commenced for 4 days.
Days 4-8: After 4 days increase dosing to 1mg/kg/day (6 kilogram child would receive a dose of 2mg three times a day).
Day 8+ and thereafter: If no concerns (including respiratory/ GI symptoms), increase the dose up to 2mg/kg/day divided into three doses (ie 4mg three times a day for a 6kg child)
Hospital Treatment regime
Week one: A dose of 1mg per kilogram of your child’s body weight per day divided into three doses (a 6 kilogram child would receive a dose of 2mg three times a day).
Week two: The dose will be increased to 2mg per kilogram of your child’s body weight per day divided into three doses. This increase in dose will take place following an assessment to ensure compliance and tolerance of treatment.
NB. It is important that you remember to bring your child’s propranolol to the all admissions to avoid delay in treatment.
Ongoing: The propranolol dose will be increased in line with your child’s weight gain at subsequent clinic visits/ telephone calls. The duration of treatment will be determined by your child’s referring consultant and will usually be continued until about one year of age, this will be depending on child’s response to treatment.
A follow-up telephone appointment with the paediatric cardiology CNS will be arranged for your child in six to eight weeks after commencing treatment and during the home treatment regime.
Long term follow-up will be provided by the referring consultant, (dermatology, plastics, ENT or ophthalmology) to assess your child’s haemangioma’s response to treatment.
You will be asked to sign consent forms for clinical photographs to be taken of your child’s haemangioma, at several stages throughout your child’s treatment, as deemed necessary by your child’s consultant. This is so that an accurate record of your child’s treatment and their response to the propranolol can be made.
At home you will be giving the propranolol three times a day. You should give it first thing in the morning, in the middle of the day and before bed. You do not need to wake your child up to give a dose at night if they have had a good intake before the last dose.
Stop the propranolol if your child develops an episode of bronchiolitis or wheeze. Restart the propranolol once they are well they are well in themselves.
Stop the propranolol if your child has an episode of gastroenteritis with diarrhoea, vomiting or reduced oral intake. Restart the propranolol as normal once symptoms have finished and they have started eating & drinking again. It is recommended that babies are given the evening dose with their evening milk and also feed during the night time. Paracetamol is safe to be given alongside Propranolol if required.
It is recommended to avoid teething gels containing lignocaine when on Propranolol, speak to your pharmacist about alternative gels.
Your child’s propranolol medication will not be stopped on one go. Instead, the dose of propranolol that your child receives will be gradually reduced over two weeks by your consultant halving the dose every week.
If you have any concerns relating to your child’s immediate health please contact your general practitioner.
Alternatively, if the matter is a query relating to your child’s diagnosis and is non urgent, please be sure to ask your questions at your next outpatient appointment, or, contact one of the following:
- Clinical nurse specialist for paediatric cardiology, Department of paediatric cardiology Box 267, Addenbrooke's Hospital, Cambridge University Hospitals NHS Foundation Trust, Hills Road, Cambridge, CB2 0QQ Tel: (01223) 256920 Cardiac secretary: (01223) 217985
- Consultant paediatric ophthalmologist, Department of ophthalmology, Clinic 3, Box 41, Addenbrooke’s Hospital, Cambridge University Hospitals NHS Foundation Trust, Hills Road, Cambridge, CB2 0QQ Secretary: (01223) 216700 Clinical nurse specialist: 01223 596414
- Consultant paediatric dermatologist, Department of dermatology, Clinic 7, Box 46, Addenbrooke’s Hospital, Cambridge University Hospitals NHS Foundation Trust, Hills Road, Cambridge, CB2 0QQ Secretary: (01223) 216501 Clinical nurse specialist: 01223 217391
- Consultant paediatric ear, nose and throat (ENT) surgeon, Department of ENT, Clinic 10, Box 48, Addenbrooke’s Hospital, Cambridge University Hospitals NHS Foundation Trust, Hills Road, Cambridge, CB2 0QQ Secretary: (01223) 216486 Clinical nurse specialist: 01223 216162
References/ Sources of evidence
- Léauté-Labrèze C, Dumas de la Roque E, Hubiche T, Boralevi F, Thambo JB,
- Taieb A. Propranolol for severe hemangiomas of infancy. N Engl J Med. 2008, 358(24):2649-51
- Seigfried EC, Keenan WJ, Al-Jureidini S. More on Propranolol for haemangiomas of infancy. N Engl J Med. 2008, 359(26):2846-7
- Love JN, Sikka N. Are 1-2 tablets dangerous? Beta blocker exposure in children. J Emerg Med 2004, 26:309-14
- Great Ormond Street Hospital 2018, Treating haemangiomas with propranolol: information for families
- Solman L, Glover M, Beattie PE, Buckley H, et al. Oral propranolol in the treatment of proliferating infantile haemangiomas: British Society for paediatric dermatology consensus guidelines. British Journal of Dermatology. 2018, 179 (553-554)
The Birthmark Support Group offers support and advice to parents of children with all types of birthmark. Telephone their helpline on 0845 045 4700 or visit their website at www.birthmarksupportgroup.org.uk
Changing Faces is another organisation that will be able to offer help and support to anyone living with a condition that affects their appearance. Visit their website at www.changingfaces.org.uk or telephone their helpline on 0845 4500 275.
Privacy & Dignity
Same sex bays and bathrooms are offered in all wards except critical care and theatre recovery areas where the use of high-tech equipment and/or specialist one to one care is required.
We are smoke-free
Smoking is not allowed anywhere on the hospital campus. For advice and support in quitting, contact your GP or the free NHS stop smoking helpline on 0800 169 0 169.
Help accessing this information in other formats is available. To find out more about the services we provide, please visit our patient information help page (see link below) or telephone 01223 256998. www.cuh.nhs.uk/contact-us/accessible-information/
Cambridge University Hospitals
NHS Foundation Trust
Hills Road, Cambridge
Telephone +44 (0)1223 245151