Due to an early cold and flu season and increased demand, please note that some families with less urgent health concerns may experience longer wait times in our Emergency Departments. Here's what parents and caregivers should know during this busy time, with tips for evaluating symptoms, where to get care now and more.
131I-MIBG (iodine I 131-metaiodobenzylguanidine) treatment is a type of radiation therapy that is used to treat certain types of cancerous tumor cells including neuroblastoma, pheochromocytoma and paraganglioma.
During this treatment, the MIBG molecule is combined with radioactive iodine to form a substance called 131I-MIBG (therapeutic MIBG). This clear liquid looks like water and is given to patients during a two-hour infusion through an IV or central line into the patient’s vein. When the radioactive 131I-MIBG is infused into the patient, it is absorbed by tumor cells. The iodine then releases radiation that kills the cancer cells.
Although traditional radiation therapy can help treat neuroblastoma, neuroblastoma can be found in multiple places in the body, which makes it difficult to treat with standard radiation. During standard radiation, an external beam of radiation is targeted to a certain part of the body. During 131I-MIBG treatment, radiation targets the neuroblastoma cells anywhere in the body through the bloodstream.
What to expect during MIBG therapy
To protect your child's bladder from too much radiation, your child will have a Foley catheter placed before receiving the 131I-MIBG treatment. A Foley catheter is a soft tube that is inserted into the bladder to drain urine. The Foley catheter will stay in place for at least 2 to 3 days after the treatment, while your child is still in the hospital. Your child will also have to take potassium iodide drops to protect their thyroid from the treatment.
Your child’s body fluids (urine, sweat, tears, etc.) will be radioactive immediately after the infusion and for about 2 weeks following the infusion. If these fluids come into contact with other people, it can be harmful. Your child will still be radioactive after being discharged and will have specific instructions to follow to prevent others from being exposed to too much radiation.
After the 131I-MIBG infusion is complete, your child will need to be hospitalized in our special lead-lined room while the radioactivity is being cleared from their body. This will take anywhere from 4 to 7 days and your child will remain isolated in the lead-lined room.
Two adult caregivers (parents, grandparents or guardians) are needed to help provide care for your child during hospitalization. At least one adult should stay in the hospital at all times with your child during the treatment. The adult will have to spend most of the time outside the room, only going in to care for your child and give medications.
Typically, children feel well during the treatment. Sometimes they can have nausea or feel sick after the therapy for a couple of days and can feel tired for a couple of weeks after the treatment. Some children develop swollen cheeks after the treatment because it can affect the salivary glands. Occasionally, they may have high or low blood pressure for a short time during the 131I-MIBG infusion. The hardest part of the treatment is usually boredom for your child who must stay in bed in the special room. If they are very active, we may have to give them medicines to be calm or sleepy while they are in the room.
Will I be able to visit my child?
During the infusion, special monitors, microphones and televisions in the room allow for easy communication between the child, parents and staff. Parents will provide most of the child’s care such as giving medication, feeding and bathing.
Our team will train you prior to the infusion to explain what you’ll need to do. We’ll also work closely with your family during your child’s hospital stay. Parents and staff must wear gloves, gowns and shoe covers to enter the room, as well as a device to measure radiation exposure.
We cover surfaces in the room with plastic to protect the floor, walls and bed from radiation spills. We have a large shield that surrounds the child’s bed to protect parents and staff from the radiation. We’ll also use a catheter and drain system to get rid of the radioactive urine.
What can my child do while at the hospital?
To help pass the time and make the experience less stressful, our child life specialists will work with your family prior to your child's admission to find fun activities to keep your child busy.
What to expect after MIBG therapy
Your child will be discharged from the hospital once enough radiation has cleared from your child’s body to safely go home.
First, we will do a special test (MIBG scan) to see where the MIBG went within your child's body. This is similar to the routine 123I-MIBG imaging scans your child has to follow their neuroblastoma. Then, the team will provide you with clear instructions about who can be around your child and special restrictions about bathrooms, eating utensils and sleeping arrangements. These instructions will be specific to each child based on travel distance, age, radiation dose and who else lives in their house.
Once home, your child will still need daily medication to protect their thyroid. You will also come to clinic a couple of times each week to have labs checked for 4 to 6 weeks.
Usually about 10 to 14 days after the infusion, you will need to bring your child to the clinic for an infusion of stem cells to help their bone marrow recover faster from the therapy. We may also give your child a medicine called G-CSF to boost this recovery. After this treatment, you will need to bring your child to the clinic for labs and exams to see how their blood counts are recovering.
Why choose us for MIBG therapy?
Our team of pediatric experts participates in extensive research on 131I-MIBG for neuroblastoma in children. We’re the only hospital in the region and one of only approximately 25 hospitals in the United States that offer MIBG therapy for kids. MIBG must be given carefully to keep your child, your family and our staff safe.
To make our MIBG treatment as safe and comfortable as possible for your child, we’ve built a state-of-the-art room in our East Tower designed specifically for this type of therapy. The room’s walls, floor, ceiling and door are lined with lead, which keeps the radiation inside the room. There are also shields around the bed, which are made of lead, to protect parents and caregivers after infusion.
Our team of experts
Our MIBG Program includes a specially trained team of nuclear medicine doctors, pediatric oncology doctors, nuclear medicine technologists, a radiation health physicist, pediatric oncology advance practice providers and pediatric oncology nurses.
In addition, the team includes specialists from our Wellness Program, child life specialists, social workers, a chaplain and a psychologist. This multidisciplinary team works together to ensure that MIBG therapy is given as safely and effectively as possible, while providing important emotional support to your child and family.
Keeping you safe, wherever you are
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