Video: Noah shares his experience getting MIBG therapy

Although it looks like water, MIBG is actually a special medicine that contains radiation. Radiation used for therapy can be provided in two different ways. Typically, a machine delivers it from outside of the patient’s body. However, radiation also can be given inside the body through a central line or IV. That is how I-131 MIBG therapy is given.

When the radiation in MIBG is inside your child’s body, it will find the cancer cells in your child’s body and attack those cells. The MIBG also will make its way out of your child’s body through sweat, spit, pee and poop – and that MIBG is also still radioactive. The procedure used to put the MIBG inside your child’s body is called an infusion, and it takes less than 2 hours. Once it’s done, your child will need to stay in the hospital room for the next few days to control the radiation exposure to others and for monitoring.

Frequently Asked Questions About MIBG Therapy

What does the MIBG room look like?
The MIBG room looks much like any other hospital room, except for a few key differences.

MIBG room

There are actually two connected rooms. The main room is where your child will stay. It has lead built into the walls to stop the radiation from the treatment from escaping the room. The smaller room (called the anteroom) is for the parents or other caregivers. Most of the time, the door that connects the rooms (which also has lead in it) will stay closed, but there is a window between the two rooms and a camera so you can see your child in the room. You can spend time in the room with your child when they need you, but we ask you to stay in the anteroom much of the time to limit your exposure to radiation.

MIBG room with plastic

Many things inside the room are covered in plastic. This limits the spread of any radiation from your child’s body fluids to the surfaces and equipment in the room. There are also radiation shields next to the bed. These are for you and the staff to stand behind to lower your exposure to the radiation that is inside your child. Toward the end of the hospital stay, the radiation will be low enough that you can get closer to your child.

boy playing with toys in MIBG room

Your child will be provided an assortment of toys and games. (Our child life specialists will talk with you and your child about what your child enjoys most, so that the toys and games provided will be right for your child.) The room also has a TV, DVD player and Playstation 2, so your child can watch TV, movies and play video games.

Who is allowed to visit with my child?
If possible, two caregivers should plan to be available to provide much of the care and support for your child during the hospital stay. Only one caregiver is permitted in the room at a time. When entering the room, caregivers wear badges called dosimeters to measure the radiation you receive as you care for your child. We will monitor those levels to ensure they stay within a safe range. A chair bed is provided in the anteroom for one caregiver to stay overnight. Anyone who is pregnant or under age 18 is NOT allowed in the room. 

As a caregiver, what are my responsibilities during and after MIBG treatment?
As your child’s caregiver, you will play an essential role in providing your child’s day-to-day care and support, including helping your child with his/her daily needs, such as feeding your child, brushing your child’s teeth, washing, and diaper changing if necessary. Our nurse practitioner and radiation safety staff will work closely with you to prepare for your child’s stay, to review the care that you will be expected to provide to your child during and after the hospital stay, and ways to minimize radiation exposure.

How will my child feel during MIBG therapy?
Most children don’t feel any side effects from the MIBG therapy. In fact, MIBG is usually much easier for children than chemotherapy. While many children become nauseas following chemotherapy, this is almost never the case with MIBG treatment. And although we take many safety precautions regarding radiation levels, your child will not actually feel that radiation inside the body. One common side effect is that your child may develop lower blood counts about 2-3 weeks after the MIBG infusion, and may feel more tired. The hardest part of MIBG therapy for most children is the boredom of staying in the MIBG room during the treatment. However, as mentioned above, we will provide toys and activities to keep your child busy during this time.

How long will my child stay in the hospital?
Your child will remain in the MIBG room about five to seven days. Immediately after the MIBG infusion on Day 1, your child will have minimal contact with caregivers and hospital staff until his/her body gets rid of much of the radiation (mostly through urine). Over the next few days, the radiactivity level will continue to decrease. After about five to seven days, once the amount of radioactivity drops to a safe level, your child will be ready for discharge. Even then, your child still will have a small amount of radioactivity in the body, so you will need to go directly home with your child and to follow some simple safety precautions at home, as you did in the hospital.  Typically we ask you follow these safety precautions for about one more week.

How will you measure radiation safety and minimize risks?
As mentioned above, all caregivers and staff wear dosimeters so that we can continually measure radiation levels to ensure caregivers are at safe levels throughout the therapy. Anyone who enters your child’s MIBG room also will wear disposable gowns, gloves and shoe coverings. Meanwhile, your child will have a Foley catheter (a thin tube inserted into the bladder to drain urine) placed to limit radiation exposure to your child’s bladder. The amount of radiation caregivers receive is typically less than what a person would get from a CT scan.

Will any personal belongings in the MIBG suite need to be thrown away after treatment?
No, that usually won’t be necessary. However, you should only bring things from home that have a smooth hard surface (like an iPad or a Nintendo DS) and can be easily wiped down and cleaned. Stuffed animals, pillows, clothes and blankets should stay at home. Anything your child comes into contact with or contaminates by contact to their body fluids will need to be tested for radioactivity to see if it is OK for you to take it home. Items that remain radioactive will need to be discarded or kept at the hospital until the item is no longer radioactive. Caregiver should not eat or drink in the room and any caregiver belongings should be kept in the anteroom, where they will be safe. You should not bring anything that is particularly valuable or irreplaceable, just in case it becomes contaminated.

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