New advice to address safety concerns when using clonidine patches for dystonia

New guidance has been issued to address safety concerns regarding the use of clonidine patches for children with dystonia, emphasising proper patch application and the importance of following dosing instructions. Parents are advised to ensure patches are applied correctly and have a backup plan for switching to liquid medicine if patches are unavailable due to supply issues.

September 30, 2024

What is dystonia?

Children with dystonia (also called hypertonia) or muscle stiffness get painful and distressing movements and muscle spasms, which can may make everyday tasks difficult, such as feeding, washing, dressing, sitting and sleeping.

What is clonidine?

Clonidine is one of several medicines that help to reduce muscle spasms and unwanted movements and improve muscle comfort.

What are the safety concerns?

Clonidine is available as liquid medicine and as patches. The patches may work better than the liquid medicine in some children or cause fewer side-effects. However, there have been concerns about whether patches are being used safely.

The Neonatal and Paediatric Pharmacy Group (NPPG) has recently developed guidance about clonidine patches for health professionals. Medicines for Children has been working with the NPPG to develop information for parents and carers.

How are clonidine patches used?

Clonidine patches come in three strengths, which release 100, 200 or 300 micrograms of clonidine each day for 7 days. To get the right dose, children may need more than one patch at a time. Parents need to remember to change each patch after 7 days.

The NPPG recommends use of whole patches only. In the past, parents may have been told to cover part the patch; however, this is not always easy to do and there have been concerns about whether children risk getting the wrong dose.

Clonidine patches are usually imported from abroad, which means that they may not be labelled in English. Each package contains two different shaped patches: one is the patch containing the medicine; the other is a cover to stick over it (there may be more than one of these). It is vital that parents know which is which. The medicine patch is stuck to the skin and the adhesive patch placed over the medicine patch to keep it in place.

What to do if you cannot get patches

Because the patches are imported, there are sometimes problems getting supplies. For this reason, every child should have a written plan explaining how to transfer back to liquid medicine. Every health professional involved in the care of the child should have a copy of this plan. The plan is for health professionals to use – parents should not do this without medical support.

Medicines for Children’s new leaflet on clonidine patches explains clearly how to apply the patches and how to keep track of when to change patches. It includes a record chart to help with this. (This record is included below.)

The leaflet on how to give clonidine patches is available to view here: www.medicinesforchildren.org.uk/medicines/clonidine-patches-for-dystonia

Top tips for parents

Make sure you know which is the medicine patch and which is the cover, especially if you get a different brand from last time.
To keep track of which day you need to change each patch, you can write the day on the patch, or use a chart to keep track. You can also set up reminders in your phone or diary telling you which day to replace each patch.
When you get a new prescription, check how many patches you have to use, in case this is different from last time.
Order new patches in plenty of time, but do not order extra, as this can cause issues with supplies elsewhere.
Make sure your child has a written plan for switching back to liquid medicine.
Do not suddenly stop the clonidine patches, as this can cause serious side effects.