Typical Admission Schedule
Physical exam, access central line for labs, foley catheter is placed, IV hydration starts. Depending on protocol, chemotherapy/biologic agent may also begin. Instructions and education of safety measures for patients and caregivers will be discussed by RNs and NP. Child Life Specialists to work with patient and family to prepare for admission.
A main goal of this first day is to give your child a chance to get used to being in the MIBG room.
Your child may also need a red blood cell transfusion on the first day of the admission.
MIBG treatment is given over 1-2 hours. Parents and caregivers receive detailed safety teaching from Radiation Safety team.
Foley removed for children who are potty trained; labs drawn to check blood counts
Patients are usually safe to leave the hospital. They will have a post-therapy scan to check for sites where the MIBG went in the body. This scan does not tell us if the MIBG worked. It just tells us where the MIBG went. We sometimes see new spots that regular MIBG scans do not show.
Once a patient is ready for discharge, discharge instructions are reviewed by the MIBG team and pharmacists.
MIBG is given as a 1.5 hour to 2 hour IV infusion through either a temporary IV usually placed in a vein in the hand or arm or through your central venous line (port-a Cath or Broviac). IV fluids for hydration and other medicines will also be given.
Patients who get MIBG are considered to be ‘hot’ or radioactive and special precautions are taken to care for your child during this time until the radiation level has gone down to a level where these precautions are no longer needed (usually 4-5 days).
Special care precautions include:
A single room in a bed surrounded by a lead shield to keep family and the staff who take care of your child from being exposed to radiation from the MIBG treatment.
The length of time family can visit inside the room in front of the protective lead shield that is around your child’s bed will depend on how much radiation is measured in the room each day by the radiation specialist.
Family may visit anytime outside of the room behind a lead shield. Your child will be able to see who is visiting over the shield through a mirror. No one under 18 can provide care, nor pass the double doors into the ante-room.
No one will be able to spend the night in the special room with your child during this time.
No one who is pregnant should be involved in the care of your child during this time.
Once your child has received the MIBG, they will be considered radioactive.
The door to the room will stay open at all times for easy communication with your child. You can see each other from the door way via a mirror placed on the window sill.
Since our nursing staff is exposed to these treatments often, we expect parents/caregivers to help with general care of the patients, i.e. giving oral and/or NG medicines (if a nasogastric tube is placed), toileting, feeding, and changing clothes. During toileting, it is important to not flush anything other than toilet paper down the toilet.
Once your child has received the MIBG, you will have limited time to spend in the room, as little as 15-30 minutes in a 24 hour period, in some cases. As the days progress and the radiation level gets lower, you will have more time.
Why Parents Have to Provide Care
The UCSF MIBG team cares for many patients. If they perform non-medical care for all MIBG patients, over time they will pass the legal limits for radiation exposure, risking their health and making it impossible to care for other children. They also need to be available for more complex medical care and to help with emergencies, if any.
Therefore, one or more adult caregivers must be available to help provide non-medical care for the entire hospitalization, including overnight.
There should be NO pregnant caregivers. Female caregivers will need to take a pregnancy test.
Parent Expectations and Accommodations
One parent/caregiver is REQUIRED stay with the child at ALL times.
There is an ante-room (small area outside the child’s room) for you to sleep and stay during the day.
MIBG ante-room MIBG patient room
Only one caregiver can stay overnight in the ante-room. Our Family House can accommodate others.
It is best to have 2 caregivers available to help with the care of the child. We REQUIRE at least 2 caregivers to assist with care of younger children to avoid over exhaustion and promote safety for families and staff.
The nurses will provide support for your child including:
- Administration of IV medications
- Regular evaluations
- Radioactivity monitoring of your child
- Parent and other caregiver education and support
- Continuous video monitoring of your child from the nursing station
- Emergency care if the need arises
How does MIBG affect caregivers?
There are safe levels of radiation exposure for everyone. Our radiation safety team will help determine what is safe for all caregivers.
All caregivers will need to walk into the room with the appropriate protective clothing, gown, gloves, shoe covers and radiation counter.
Parents and caregivers will meet with a radiation safety team member to review appropriate safety guidelines.
How much radiation exposure will caretakers receive?
Family caregivers usually receive between 50 - 300 mRem during a treatment. The federal government limits a family caregiver to 500 mRem per year. The limit for medical staff is 5000 mrem per year.
By comparison, the typical person living in the U.S. receives a “natural” background radiation dose of about 300 mRem per year.
Some other sources and amounts of this radiation are shown below.
Cross-country flight: 5 mRem
Chest X-Ray: 10 mRem
Living in Denver: 500 mRem
PET scan: 630 mRem
MIBG scan: 780 mRem
Chest/Abdomen/Pelvis CT: 1200 mRem
Side Effects While in Hospital
During the infusion there can be blood pressure changes. A doctor will attend the entire infusion to help monitor for this. The patient will also be monitored by video camera and with a vital sign monitor.
After the infusion common side effects are:
- Discomfort from the foley catheter
- Nausea and maybe vomiting
- Pain in the salivary glands
- Dry mouth/decreased appetite
To help with symptom control the patient will be given anti- nausea medicines and pain medicines when needed. We recommend bringing sour candies to help with the salivary pain.
Boredom from having to stay in bed is the number one complaint from kids, but most patients are discharged from the hospital within 5-7 days.
We offer medications to help keep the younger children calm during their stay, as being confined in a bed/crib for an extended period of time can cause anxiety.
MIBG is completely different from other therapies your child has already experienced.
The main side effect of MIBG after the treatment is low blood counts beginning 2-3 weeks after the infusion. If your child is being treated with MIBG in combination with other medicines the blood counts may fall faster.
Depending on what protocol your child is on, he/she may also need their stem cells to be re-infused about 2 weeks after the MIBG infusion.
Your child will be closely monitored and may need supportive treatments such as GCSF/Neulasta, platelet and/or red blood cell transfusions.
Criteria for Discharge
Federal regulations require patients to remain in the hospital until the radiation level detected at 1 meter’s distance away from the patient (about 3 feet) is below a certain level. Radiation Safety staff will check the radiation level daily.
Once the patient is released from the hospital there are usually no government restrictions that apply.
Patients will still put out low radiation levels when they leave the hospital, but at levels that are considered relatively safe for others around them. Most children should plan to stay out of daycare or school for the following week and need to carefully follow discharge guidelines.
The staff will provide thorough instructions and training before you leave.
The radiation safety team will place a wrist/ankle band on your child prior to leaving the hospital. It will be worn for 30 days. It will let other health care providers and airport security know your child has been treated with radiation. It will also have an emergency contact number for UCSF.