Caring for your child at home
Once the medical team and radiation safety officer (RSO) clear your child for discharge from hospital after 131I-MIBG therapy, you will need to continue following radiation safety precautions at home. The effects of treatment will continue over the next few weeks after the 131I-MIBG infusion. Knowing how to safely care for your child at home is crucial for your child’s health and to protect yourself and others from radiation exposure.
Discharge from the hospital
Children treated with 131I-MIBG therapy need to stay in the hospital until their radiation level is below a specific level. The RSO will check this level daily. Usually, the hospital stay is five to seven days but could be longer. When your child leaves the hospital, they will still have measurable radiation levels. The RSO will give you detailed discharge instructions on radiation safety that will be tailored to your home setup. The basic principles to follow for radiation safety are those of distance, time and proper hygiene.
Follow-up care
Follow-up care after 131I-MIBG therapy can happen at your home institution. When you return home, your child will need to have blood work done twice a week with their primary oncology team.
131I-MIBG therapy can affect the bone marrow’s ability to produce normal blood cells. If this happens, your child becomes prone to infections, bleeding and developing anemia. Your child will likely need transfusions of platelets and red blood cells for a few weeks after 131I-MIBG therapy. Your child may also need granulocyte stimulating factor injections or a stem cell reinfusion.
When to seek medical care (after discharge from hospital)
Call your child's primary oncology team or go to the nearest Emergency Department right away if your child is experiencing any of the following:
- A fever of 38°C or more by mouth or 37.5°C or more under the arm
- Uncontrolled nausea or vomiting
- Prolonged bleeding or significant bruising
- Pale skin, tiredness and/or shortness of breath
- Difficulty breathing
- Appearing less alert
What if I have questions?
This information may seem overwhelming. You are encouraged to write down any questions that you have about this treatment experience. The 131I-MIBG care team is happy to answer any questions that you have at any time.
What to do if you have concerns
Contact your child’s primary oncology team if you are concerned about your child. If your child presents to the hospital or Emergency Department within two weeks of receiving 131I-MIBG therapy, it is important to inform the health-care staff that your child has received the MIBG therapy and to contact the institution's radiation safety officer (RSO) for guidance.