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People who receive red blood cell transfusions frequently can have too much iron in their bodies. Your child’s care team wants to make sure the iron levels are not causing damage to their body. An iron overload evaluation includes tests to ensure iron is not harming your child.
The doctors use many different tests for this evaluation. No one test is the best, and the doctors will look at the results of all the tests together to see how your body is tolerating the iron received from transfusions. If you have had these tests before, the doctors will compare the new results with the old results.
If taking Desferal (a medicine to help get rid of iron), your child’s care team will look for side effects of that medicine, too.
If your child is already taking this medicine, the care team will likely tell you they need to continue taking it as prescribed before the tests.
This list is to help you understand some of the tests your child may be having. Not every patient has every test. Your child’s care team will decide which tests are needed. Always ask if you have questions about the tests.
|Pre-clinic||Vital signs, weight, and height will be measured. Most blood tests will be collected here. Ask the care team if you need to leave an IV catheter in place for other tests. This appointment is scheduled for first thing in the morning. Please do not allow your child to eat or drink for 8 hours before this blood draw. It will affect the results.|
|Hematology follow up||Your child will see their primary doctor, who will ask about their health history since the last visit. The doctor will also perform a physical exam. You may want to write a list of questions you want to ask the doctor at this time.|
|Echo/EKG||This is a painless test to measure the size of the heart and how well it is working. The echocardiogram (Echo) is an ultrasound of the heart. The care team can take pictures and measurements. The electrocardiogram (EKG) is a measure of the electrical activity of the heart and its rhythm. Too much iron in the heart muscle can cause it to grow, work too hard, have irregular rhythms, or pump blood less effectively. The doctors will compare these results to earlier tests if those are available.|
|X-ray (chest and bone age)||The bone age X-ray shows the doctors whether the bones are growing properly for your child’s age. People with too much iron sometimes have changes in growth patterns. The chest X-ray shows the doctor the size of the heart and the appearance of the lungs.|
|Audiology visit||Audiology is the study of hearing. Anyone using Desferal may have changes in the nerves for hearing. But iron can also damage the hearing nerves.|
|Eye Clinic visit||An eye doctor will examine your child’s eyes for any vision changes or changes to the structure of the eyes. People who use Desferal may have changes to their retinas over time. If your child has diabetes, there may also be retinal changes that can affect vision.|
|Endocrine specialist visit||These doctors specialize in the growth and hormones of children and adolescents. They will measure your child’s height and weight and ask questions about growth and development. They will look at the results of many of the blood tests to see if your child has normal amounts of hormones for growth and development. Some children with too much iron have delayed growth or delayed onset of puberty or changes in insulin production and use (diabetes).|
|CT bone density||This is a CT or CAT scan to look at the thickness of the bones. People who have excess iron can have thin bones that break easily. It is a painless test (like an X-ray). The doctors will compare the results to other bone density tests you may have had. Desferal can also increase calcium loss from the bones.|
|Nuclear medicine (MUGA scan)||During this test, a dye is injected in your veins. Using special scanning equipment, the doctors will watch the flow of blood through the heart to see how well it is pumping. This should be a painless test.|
|Abdominal ultrasound||If your child has hepatitis, they will probably have this painless evaluation to look at the size and shape of the organs in the abdomen, especially the liver.|
|Liver biopsy||This test is not done with every iron overload evaluation. For this test, your child will be given medicine to help them sleep. The doctors take a small sample of liver tissue using one of two methods: through a vein in the neck or with a needle through the abdomen directly over the liver. The care team will decide which method is best. Your child will need to stay in the hospital all day so the care team can watch for any side effects of the procedure. Your child will probably not have an incision or stitches, but they may feel a little tired or sore. This test will measure how much iron is in your liver. This test also shows if any damage has been done to the liver by hepatitis or iron deposits. The care team will compare this to past results.|
Listed below are some of the laboratory tests the care team may order. You may not need every test. Some of the results will be available the same day. Others may take several days or weeks. Talk with your child’s care team about the results.
|CBC (complete blood count)||This blood test measures the number, size, and type of cells in the blood. From this test, the staff can learn the amount of hemoglobin your child has and decide whether you need a transfusion of blood or platelets.|
|Chem 18||This blood test measures the amount of 18 different chemicals and electrolytes in your blood, such as sodium, potassium, magnesium, or liver function tests.|
|Ferritin||Ferritin is an iron-storage protein produced in the body. It usually corresponds to the total amount of iron stored all over the body.|
|2-hour glucose and insulin test||The care team will ask you to note when your child had a big meal. Then, they will draw blood 2 hours after that meal. Some people with too much iron develop diabetes. This blood test tells how well your child’s body uses up its sugar with the hormone insulin, and whether they are at risk for diabetes.|
|Coagulation screen||The liver makes the proteins that help the blood clot when you are injured. The care team wants to make sure your child’s liver is producing the right amount. A member of the care team will have to use a needle (a fresh stick) to collect this blood sample, even if your child has a central line, such as a subcutaneous port.|
|Free T4, TSH, PTH, FSH, etc.||All these chemicals are hormones. Since iron overload can affect your child’s growth and development, this is one way the care team can measure their development.|
|24-hour urine collection||The care team will ask you to collect all your child’s urine for 24 hours and keep it in a container they will give you. Please keep the urine cold (on ice). After 24 hours, the laboratory measures how much of several chemicals, such as iron, glucose, or protein, are in your child’s urine. They compare this amount to the amount in blood to see if the kidneys are filtering the blood well and removing harmful chemicals correctly. Your child will do these 2 days in a row. If your child uses Desferal, they should use it during these 2 days.|
|Hepatitis panel / HIV screen||The care team screens every patient for these viruses. Very rarely, people who have received blood transfusions have contracted one of these viruses. Hepatitis can damage the liver, the main organ of iron storage.|
|Hepatitis C PCR||If your child has hepatitis C, this test will measure the amount of hepatitis virus living in their body. The care team will watch how these increases or decreases over time.|
|Alpha fetoprotein||If you have hepatitis C, the staff will also test for this protein that can be an early warning sign of liver cancer.|
Reviewed: September 2022