Children with retinoblastoma experience pain from a number of different sources:
- The disease: cancer can cause pressure when it fills the eye, or spreads to other parts of the body.
- The treatment: pain from swollen tissues caused by cryotherapy and chemotherapy injections; sore skin around the eye during radiotherapy; mouth sores, stomach cramps, aching bones and sore muscles from vomiting during chemotherapy
- Tests and procedures: eye drops, bone marrow aspirations, lumbar punctures, insertion of IVs. Even finger pricks and port flushes can be perceived as painful, especially when children are stressed.
By developing a pain management strategy with your child, or for your child if they are too young to actively participate, you will be able to track what is working, and prepare yourself and your child for each pain experience.
This will help decrease overall stress related to procedures, and in turn increase sleep, boots wellbeing and accelerate your child’s healing.
There are 2 ways to manage pain: pharmacological medication and non-pharmacological strategies. You, your child and your care team need to work together to find the best combination of methods for your child.
Medication
Pain medications often control pain very effectively. To gain the best results, you need to use them correctly and work with your child’s medical team to find the most effective approach.
Give medicine in the right way: Some medicines work less well if crushed or diluted. Some release their benefits slowly over time, and crushing or diluting them can dangerously increase their effects. Always follow the instructions on the bottle or box. Ask a doctor or pharmacist for clarification if you have questions about how to safely give each medication..
Give the prescribed dose: The goal is to keep your child pain free without making her too drowsy to enjoy company and play. Do not change the dose without advice from your doctor.
Give medication regularly: Pain medications work best when there is a constant therapeutic level in the blood. Pain can return if you do not give the correct dose regularly. When this happens, the dose needs to be increased to bring the pain back under control.
Treat pain quickly: Less medication is needed to control pain when it is treated at the fitst signs.
Use the form that works best for your child: Some pain medications can be delivered without having to swallow pills or liquids. For example, skin patches and suppositories. Talk to your child’s doctors about the options available.
Give the right medication: Different medications often work for different types or levels of pain. Work closely with the doctors to find which combination, dose and timing is best for your child. This may take some time and patience, and medications may need to be adjusted over time.
Talk with the doctors: If you are concerned that the dose and schedule is not controlling your child’s pain, talk to the doctor or key nurse so they can make adjustments.
Non-Medication Pain Strategies
Help your child manage pain by using techniques described in our Child Life Pain Management section. Many of these use mind-body strategies to interrupt or distract the mind from pain sensation. This breaks the negative cycle of distress – tension – pain.