Pediatric Transplant Patients
Pediatric Transplant Q&A
New London Specialty Pharmacy (NLSP) aspires to advance the field of pediatric transplantation by individualizing therapy for each child. Our pharmacy is dedicated to providing optimal care by compounding medications that are specialized to meet each patient’s needs. We strive to compound medications that are not readily available and make medications that are easier for children to take. NLSP aims to teach parents about the safety of pediatric transplant medications to ensure that their children are receiving the best care possible. NLSP works closely with every pediatric patient’s family to answer questions, counsel on important side effects, and guarantee adequate treatment plans. When therapy is managed appropriately, children with organ transplants can lead healthy lives. Our pharmacy team has specialized training in pediatric transplantation and a strong foundation in working closely with pediatric transplant patients. Clinical pharmacists assess each patient’s medication list to optimize doses and reduce drug interactions.
Questions and Answers:
1. What is a solid organ transplant?
a. Solid organ transplant is a procedure that removes a diseased organ and replaces it with a healthy donor organ. Transplants can effectively restore the function of organs and will require lifelong follow-up care.
2. What are some common medications my child may be prescribed for organ transplants?
a. Common medications include prednisolone, hydrocortisone, Neoral (cyclosporine modified), Prograf (tacrolimus), and Cellcept (mycophenolate mofetil).
3. Why are medications that suppress the immune system used?
a. A patient’s immune-fighting cells (white blood cells, also known as leukocytes) may see the organ transplant as a foreign object. If this happens, the immune-fighting cells will try to attack the transplant. Transplant medications will suppress these immune cells from sending out an attack signal, known as rejection. These medications will enhance transplant recovery and reduce the risk of transplant rejection.
4. What should I do if I forget to give a dose of one of my child’s transplant medications?
a. If you miss a dose, give a dose as soon as you remember. If it is close to your child’s next dose, skip the missed dose and go back to your child’s normal dosing schedule. Do not give 2 doses at once to make up for the missed dose. Please consult your healthcare professional if you miss more than 2 doses.
5. What is one important precaution that should be taken with transplant medications?
a. It is essential to avoid the sun during the hours where sun exposure has the highest UV index (i.e. 10am to 4pm). When exposed to sunlight, it is important to apply sunscreen with SPF 30 or higher.
6. Why is family support in post-transplant medication management valuable?
a. Medications used for pediatric transplants can be very effective and can provide successful results if taken as directed. It is important to ensure that the child is taking the medication as the physician directed to prevent transplant rejection and improve outcomes.
7. Should your child get involved in the recovery process and if so, how?
a. Help your child set goals that reflect eating healthy, exercising routinely, and maintaining at least 8 hours of sleep nightly. Also, involve your child in his or her medication regimen. Studies have shown the more involved child is in his or her care, the better the outcome.
8. How can the patient’s family help the child transition back to school?
a. Schedule a playdate with the child’s friends or give their parents a call to let them know your child is okay and let them know it is safe for everyone if they play together. You can also schedule a speaker to come into the child’s school to talk to his or her class about organ transplants.
9. What if my child has to take his or her transplant medication multiple times a day and he or she is in school?
a. Some of the immunosuppressive medications are taken twice daily meaning your child may need to take a dose while at school. This is not a problem. In order to ensure your child receives the prescribed medicine(s) on time, you should obtain a written order from your child’s physician. This will allow the appropriate school personnel (i.e. the school nurse) to give your child medication.
To make things even easier for you, we recommend that when you fill your medication, you instruct your pharmacist to place your child’s medication into two labeled vials, one for home and one for school.
Most schools require a medication consent form to be filled out for every new or changed medication. Do not have your child carry their own medication, as schools require medications to be dropped off by the parent or guardian of the child and left at the school. Additionally, ensure your child's school has an adequate supply of the child’s medication as well as picking the remaining medication if the child’s therapy changes.
10. What are some immediate concerns post-transplant?
a. Within the first month post-transplant, your child is at risk for thrush and CMV (Cytomegalovirus).
11. What is Cytomegalovirus (CMV) and how common is it in transplant patients?
a. CMV is a common viral infection seen in some solid organ transplants, mostly renal (kidney) transplants. The virus commonly infects the retina of the eye, if your child experiences visual changes such as seeing streams, you should contact your doctor. Your doctor may start your child on antiviral medication to prevent against CMV, shortly after transplantation. Prevention and treatment of a CMV infection is normally treated with Valcyte (Valganciclovir), however your child’s doctor may prescribe an alternative.
12. What can I do to prevent infections in my child post-transplant?
a. Follow the medication regimen your physician prescribes your child. Your child’s doctor will may give your child antimicrobial regimen via I.V. while at the hospital. This will protect your child from getting bacterial, viral or fungal infections. One of the most important elements of infection prevention is hygiene. Encourage hand-washing after using the restroom, handling animals or dirty items, and before eating. Keep your child away from sickly persons or anyone with the flu.
13. What are some common activities that my child should refrain from post-transplant?
a. Transplant recipients should avoid changing kitty litter and should not have pet birds or rodents. These can be host of some fungi that cause infections in your child. Other activities your child should avoid include walking barefoot, going in hot tubs, eating uncooked meats or eggs, eating from salad bars, and going into highly crowded areas (shopping malls, subways, elevators).
Our pediatric transplant specialty trained pharmacists are here for you. Please let us know what we can do to help you make things easier during this time.
Support & Resources
- United Network for Organ Sharing
- National Kidney Foundation
- Transplant Living
- International Pediatric Transplant Association
New London Specialty Pharmacy aspires to advance the field of pediatric transplantation by individualizing therapy for each child. Our pharmacy is dedicated to providing optimal care by compounding medications that are specialized to meet each patient’s needs. We strive to compound medications that are not readily available and make medications that are easier for children to take. New London Specialty aims to teach parents about the safety of pediatric transplant medications to ensure that their children are receiving the best care possible. The pharmacy works closely with pediatric patient families to answer questions, counsel on important side effects, and guarantee adequate treatment plans. When therapy is managed appropriately, children with organ transplants can lead healthy lives. Our pharmacy team has specialized training in pediatric transplantation and a strong foundation in working closely with pediatric transplant patients and providers. Clinical pharmacists assess each patient’s medication list to optimize doses and reduce drug interactions.
New London Specialty Pharmacy provides specialized care to our tiniest patients.