Medications
In preparing for discharge, it is important for you and your child to understand why and how each medicine is given. Discharge will not occur until all of the medication levels are stable, and parents understand how to take care of their child at home.
Some important points to remember:
- Do not increase or decrease your child’s medication without discussing it with the physicians first.
- Get more medication from the drug store before the supply runs out. Plan ahead for weekends and vacations.
- When your child no longer needs a specific medicine, it will be stopped by the transplant physician.
- Do not give over-the-counter medications for colds or flu without consulting your physician.
Initially, clinic visits will be scheduled twice a week. If your child is stable after a month, the labs and visits can be scheduled once a week. Eventually, this will decrease to twice a month and then finally monthly. On the day you come to clinic, do not give your child a dose of Prograf. Bring the dose to the hospital and give it to your child after blood work is drawn.
Immunosuppressants
After transplantation, children require medications to prevent rejection. These immunosuppressant agents must be taken for the remainder of your child’s life. Initially, most children receive “triple therapy,” a three-drug combination with Prograf, Cellcept and Prednisone. Each of the medications has some side effects which will be discussed with you at the time of discharge.
Always administer the medication as directed. If you have questions about the times that the medicines are prescribed or wish to change them, be certain to check with the transplant physician or nurse practitioner first. Do not discontinue any medication without being instructed to do so. Contact your physician if you notice any physical or mental changes in your child. Do not try to make up for missed doses unless instructed by your physician. Due to the frequent medicine changes, remember to follow the medication sheet or verbal instructions from the physician and not what is written on the bottle. Ask for prescription refills days before you run out of medicine. Keep all medicine out of the reach of children.
Always carry an extra bottle of medicine with you when you travel. Pack the medicine in carry-on luggage, so you will have it in case your luggage is lost.
Prograf
Prograf is an immunosuppressant medication used to prevent rejection. It is 10 times more potent than Cyclosporine, thus requiring a smaller dose to achieve the same effect. Prograf is taken twice daily, 12 hours apart. It should be taken on an empty stomach, whenever possible. It is available in 1 mg and 5 mg capsules.
Medication levels are drawn daily while children are hospitalized to monitor drug levels. (See explanation of blood levels under Cyclosporine). On the day of clinic visits, do not give the morning dose of Prograf, instead bring it with you to the hospital. After blood work is obtained, give the dose. If a dose is missed, give the next scheduled dose at the regular time. Do not administer a double dose.
The most common side effects include neurologic symptoms, such as difficulty sleeping or shaking hands and high blood pressure. It may also cause diarrhea. Avoid the following medications when your child is taking Prograf: Erythromycin and Phenytoin.
Cellcept (Mycophenolate Mofetil)
Cellcept is used in combination with Prograf to treat rejection. Cellcept specifically affects the T and B cell lymphocytes that are responsible for turning on rejection. It is available in an oral capsule and is administered two or three times a day. Cellcept may be taken with or without food.
Prednisone (Deltasone, Liquid Pred)
Prednisone is a steroid that works with Cyclosporine or Prograf to prevent rejection. It comes as an oral liquid or a small pill, which can be crushed, swallowed or dissolved in a small amount of liquid before giving it to your child. Prednisone can cause an upset stomach if given on an empty stomach. When given in high doses, prednisone can temporarily interfere with normal growth. Over the next few months, the medical team will decrease the steroid dose until your child is off the medication, usually by the end of the first year. At this point, children begin to have rapid growth. Large doses of steroids will also increase their appetite. For most children who have not eaten very well before transplantation, this may be a blessing. However, Prednisone causes some children to retain water. To avoid this problem, limit the amount of salt in their diet (avoid salty chips, crackers, canned soups and salt on the table). Preteens and teenagers may notice an increase of acne. This is due to increased activity of the surface glands in the skin and may cause increased sweating at night. Your child may also experience mood swings. Prednisone may slow the rate of healing and decrease the body’s ability to fight infection.
Antacids
Zantac, Pepcid, Protonix, Prilosec, or Prevacid
Pepcid, Mylanta or other antacids may be prescribed to buffer the increased stomach acid caused by the Prednisone. When the dose of Prednisone is decreased, the antacids will be discontinued.
Antibiotics/Antivirals/Antifungals
Co-Trimoxazole (Bactrim)
Bactrim (Trimethoprim and Sulfamethoxole) is an antibacterial combination drug. It is prescribed to transplant patients to prevent serious pneumonia (pneumocystis carnii) that immunosuppressed patients are at risk of contacting. It is prescribed as a suspension or a tablet. Side effects include vomiting, anorexia, allergic rash, anemia and sun sensitivity. Encourage your child to drink plenty of fluids immediately before and after they take it.
Cytomegalovirus Immune Globulin (Cytogam)
Cytogam is given to treat or prevent CMV infections in transplant patients who are CMV negative and receive a CMV positive donor organ. If your child is receiving Cytogam to prevent CMV, it will be administered every two weeks for five doses. It is administered as an IV infusion. The usual side effects include flushing, chills, fever, nausea and vomiting. Prior to the first dose your child will be given Tylenol and Benadryl to prevent any problems.
- The MMR vaccination should not be given to your child for at least six weeks after the last dose of Cytogam.
Nystatin
Nystatin is an antifungal medication used to prevent thrush, an oral fungal infection. Thrush appears as a white coating on the tongue or cheeks or as a diaper rash. Nystatin is prepared as an oral liquid and must always be shaken before it’s given. If other medications are given at the same time, give Nystatin last. Your child should wait 30 minutes after the dose of Nystatin to eat or drink, since its effectiveness depends on how well the mouth is coated with the medication.
Others
Aspirin
Most children take an aspirin three times a week (usually Monday, Wednesday, and Friday) for six months to a year after transplant to prevent clots from developing in the small blood vessels that go to the liver.
Other medications may be prescribed, but are specific to each child’s condition at the time of discharge.
