Most Commonly Asked Questions from Parents of Pediatric Transplant Recipients




Pediatric solid-organ transplant (SOT) recipients and their parents are often challenged to cope with new transplant regimens as well as common situations in the context of organ transplantation. Health care professionals will receive questions from parents and children regarding clinical transplant care as well as general pediatric concerns that seem unfamiliar to families now that their child has a transplant. The literature is limited in some areas of pediatric care after SOT, and there is little guidance for the health care practitioner. To help address gaps in the literature and provide guidance for health care professionals, this article reviews some of the most commonly asked questions regarding general care after SOT, parenting the child with a chronic illness, and growth and development. The answers provided stem from the literature in part but also the combined clinical experiences of transplant centers that over time have moved toward decreased limitations and full social integration.


This article provides brief responses to many of the questions commonly asked by children and their parents after organ transplantation. This is by no means a complete list of commonly asked questions but an attempt to address those that have implications specifically related to transplantation. Individual transplant center guidelines may vary and consultation with the patients’ transplant team is important. From a list of more than 40 questions generated by the authors’ clinical experience more than 25 are included here. As with other chronic illnesses, children and parents may have difficulty attributing certain behaviors to normal growth and development versus the transplant. Counseling regarding issues such as discipline and sleep disturbance, for example, should be guided by general principles of parenting a child with a chronic illness.


Recovering from transplant


When Can My Child Return to School After Transplant?


Transplant center recommendations regarding the return to school after transplant varies from a few weeks to up to 3 months. The intent of this recommendation is that the child is healthy and on baseline or near baseline levels of immunosuppression by the time they return to school so that they are not at undue risk of infection. Many children are ready to return to school within a few weeks of their transplant. It is important for children to resume normal activities and be with peers.


Transplant recipients typically tolerate common community-acquired infections, however, exposure to certain viruses such as varicella or measles necessitates prophylactic treatment of the transplant recipient. Parents should alert school staff to this and any other special needs their child may have.


Can My Child Attend Daycare After Their Transplant?


Recommendations regarding daycare will vary between transplant centers but the guiding principles are similar to returning to school. The child should feel well enough to cope with the daycare setting and immunosuppression should be near baseline levels so that the child is not at undue risk of infection. Daycare staff should be aware of reporting exposure to communicable disease (eg, varicella) to parents.


Can My Child Exercise After Transplantation?


Returning to normal activities and participation in exercise is recommended for children after solid-organ transplantation (SOT). Regular exercise helps to maintain a healthy body weight, improves endurance and flexibility, and can contribute to an improved quality of life. After the early transplant period when wound healing is complete, there are few restrictions related to exercise. Some renal transplant centers recommend avoidance of activity that could result in a direct hit to the transplanted kidney. Use of protective equipment may mitigate some of this risk for children who intend to play contact sports, however the literature in this area is sparse. Heart transplant recipients experience slower heart rate increases with exercise and slower return to baseline heart rate after exercise as a result of autonomic denervation of the transplanted heart. Pediatric heart transplant recipients participating in competitive sports will benefit from warm-up and cool-down routines to assist in modulation of their heart rate.


Poor bone mineral density can place children at risk for bone fractures. Children with markedly reduced bone density or a history of fractures may be cautioned against participating in contact sports until bone density is improved. Moderate weight-bearing exercise should be encouraged to improve bone density. Appropriate activities should be encouraged and tailored to the child with physical disabilities.


Many pediatric transplant recipients participate in competitive sports. The World Transplant Games is an international biannual competition that profiles transplant athletes, the success of transplant surgery, and the need for organ donation. Participation in these events can be a positive experience for transplant recipients and their families.




Immunosuppression and other medications


What Happens When My Child Has Organ Rejection?


Organ rejection is the result of the body’s attempt to attack tissue that is recognized as foreign. Transplant recipients take immunosuppression medications to suppress or fool the body into accepting the transplanted organ. Most transplant recipients will have some organ rejection. This is most common early after the transplant but can happen at any time. Patients and parents can do their part to help prevent rejection by ensuring that immunosuppression medications are taken precisely as prescribed.


The transplant team often detects signs of rejection through laboratory tests and routine biopsies long before physical symptoms are noticed. Detection of rejection means that immunosuppression medications need adjustment. In most cases, this is successful in treating the rejection. Please refer to organ-specific articles in this issue for further discussion of organ rejection.


What Happens if My Child Vomits up His/Her Medications?


The decision to re-administer a vomited immunosuppressant dose involves several factors including but not limited to time from transplant, previous levels, concurrent infection, and rejection status.


For this reason, patients/families are asked to call their transplant center if the patient has vomited an immunosuppressant dose. The following general guidelines have been created based on review of population pharmacokinetic characteristics of the immunosuppressants. Doses vomited more than an hour from the time of administration do not need to be repeated ( Table 1 ).



Table 1

Repeat dosing guidelines




























Immunosuppressant Vomited Dose <0.5 Hour After Dose Time Vomited Dose Within 0.5 to 1 Hour of Dose Time
Tacrolimus or cyclosporine Give dose again Give half dose (or as close to half as possible)
Sirolimus (rapamycin) Give dose again
Mycophenolate mofetil Give dose again Do not repeat dose
Azathioprine Give dose again
Prednisone or prednisolone Give dose again


If My Child Has a Fever Can They Take Acetaminophen and/or Ibuprofen?


In general, transplant recipients may take acetaminophen for fever or pain according to the manufacturer’s dose guidelines. Patients with liver dysfunction may require a decreased dose of acetaminophen and these patients should consult their transplant team. Ibuprofen and nonsteroidal antiinflammatory drugs are discouraged and require consultation from the transplant center because of potential renal impairment. After consultation with the transplant center, some patients without renal impairment may be permitted occasional doses of ibuprofen. Prolonged fever and/or a sick child with a fever will need to be investigated further.


Are There Medications That My Child Should Avoid?


Many drugs can interact with immunosuppression medication. For example, macrolide antibiotics such as erythromycin are inhibitors of tacrolimus, cyclosporine, and sirolimus metabolism and can cause toxic levels within a few concurrent doses. Health care professionals and transplant recipients should check with the transplant center before starting a new medication to ensure no adverse interactions are known. The same precautions should be taken with over-the-counter and prescription medications as well as herbal remedies.


When Should My Child Start Looking After Their Own Medications?


Developing skills to care for their transplanted organ(s) is a long-term process. Learning about medications, their purposes, and self-administration are all important steps. In early adolescence, the young teen should begin preparing and self-administrating medications with supervision. More complex tasks such as re-ordering medications should be mastered by the time transition to adult health care setting takes place.




Immunosuppression and other medications


What Happens When My Child Has Organ Rejection?


Organ rejection is the result of the body’s attempt to attack tissue that is recognized as foreign. Transplant recipients take immunosuppression medications to suppress or fool the body into accepting the transplanted organ. Most transplant recipients will have some organ rejection. This is most common early after the transplant but can happen at any time. Patients and parents can do their part to help prevent rejection by ensuring that immunosuppression medications are taken precisely as prescribed.


The transplant team often detects signs of rejection through laboratory tests and routine biopsies long before physical symptoms are noticed. Detection of rejection means that immunosuppression medications need adjustment. In most cases, this is successful in treating the rejection. Please refer to organ-specific articles in this issue for further discussion of organ rejection.


What Happens if My Child Vomits up His/Her Medications?


The decision to re-administer a vomited immunosuppressant dose involves several factors including but not limited to time from transplant, previous levels, concurrent infection, and rejection status.


For this reason, patients/families are asked to call their transplant center if the patient has vomited an immunosuppressant dose. The following general guidelines have been created based on review of population pharmacokinetic characteristics of the immunosuppressants. Doses vomited more than an hour from the time of administration do not need to be repeated ( Table 1 ).



Table 1

Repeat dosing guidelines




























Immunosuppressant Vomited Dose <0.5 Hour After Dose Time Vomited Dose Within 0.5 to 1 Hour of Dose Time
Tacrolimus or cyclosporine Give dose again Give half dose (or as close to half as possible)
Sirolimus (rapamycin) Give dose again
Mycophenolate mofetil Give dose again Do not repeat dose
Azathioprine Give dose again
Prednisone or prednisolone Give dose again


If My Child Has a Fever Can They Take Acetaminophen and/or Ibuprofen?


In general, transplant recipients may take acetaminophen for fever or pain according to the manufacturer’s dose guidelines. Patients with liver dysfunction may require a decreased dose of acetaminophen and these patients should consult their transplant team. Ibuprofen and nonsteroidal antiinflammatory drugs are discouraged and require consultation from the transplant center because of potential renal impairment. After consultation with the transplant center, some patients without renal impairment may be permitted occasional doses of ibuprofen. Prolonged fever and/or a sick child with a fever will need to be investigated further.


Are There Medications That My Child Should Avoid?


Many drugs can interact with immunosuppression medication. For example, macrolide antibiotics such as erythromycin are inhibitors of tacrolimus, cyclosporine, and sirolimus metabolism and can cause toxic levels within a few concurrent doses. Health care professionals and transplant recipients should check with the transplant center before starting a new medication to ensure no adverse interactions are known. The same precautions should be taken with over-the-counter and prescription medications as well as herbal remedies.


When Should My Child Start Looking After Their Own Medications?


Developing skills to care for their transplanted organ(s) is a long-term process. Learning about medications, their purposes, and self-administration are all important steps. In early adolescence, the young teen should begin preparing and self-administrating medications with supervision. More complex tasks such as re-ordering medications should be mastered by the time transition to adult health care setting takes place.




General medical care and vaccines


What Is the Role of My Child’s Pediatrician and Family Doctor?


The pediatrician or family doctor will collaborate with the transplant team. Your child should be seen by their pediatrician or family doctor for routine immunizations, monitoring of growth and development, and initial assessment of illnesses. The pediatrician or family doctor is key in the initial examination and medical plan for a transplant recipient with acute illness and other long-standing health issues. There are many common childhood illnesses that will also affect the transplant patient and the pediatrician can examine and determine the appropriate steps for treatment. Fevers, coughs, sore throat, ear aches, obesity, and difficulty paying attention in school are some examples of health issues that the pediatrician or family doctor can assess initially and treat. If the acute issue does not resolve or worsens, the pediatrician or family doctor may contact the transplant center for further discussion.


When Should I Call My Transplant Center?


The transplant center is always there as a resource and can be called for direction if uncertain about who to call. If there are questions about immunosuppression the transplant center is a first contact. Acute issues that may necessitate a call to the transplant will vary for each organ group. Some examples include jaundice in the liver transplant patient, decreased spirometry readings in the lung transplant patient, and blood in the urine for the renal transplant recipient. One is always encouraged to call if uncertain and advice can be offered by phone.


Should My Child Receive Vaccinations Before Transplant?


The pediatric transplant candidate should receive a full complement of routine vaccines before transplant according to national immunization guidelines. The use of live vaccines should be discussed with the transplant team before transplant as deferral of transplantation for a few weeks after immunization may be necessary. Accelerated vaccine schedules are warranted in many children before transplant.


How Will My Child Be Immunized After Organ Transplantation?


There are several important points regarding the immunization of children after organ transplantation. Posttransplantation immunosuppression interferes with the immune responses that are needed for successful immunization. There are limited data regarding the exact timing of vaccination after transplant, however the general consensus is that vaccination can resume approximately 6 months following transplantation, when baseline immunosuppression levels are attained.


Live-attenuated vaccines such as MMR (measles, mumps, rubella) and varicella are contraindicated in SOT recipients as immunosuppression increases the risk of acquiring disease from a live vaccine. Siblings and household contacts can receive live virus vaccines without risk to the transplant recipient, however oral polio vaccine should be avoided because of possible viral shedding after administration. There may be dose or schedule alterations for some immunizations such as hepatitis B vaccine. Check with the transplant center regarding their immunization protocol.


What Happens if My Child Is Exposed to or Develops Chicken Pox?


Chicken pox (varicella) is a common childhood infection. Most transplant patients have minimal complications from the disease, however, there is a risk of disseminated infection. Prophylaxis with varicella zoster immunoglobulin is recommended within 96 hours of exposure to varicella to prevent or ameliorate the disease.


Some transplant recipients on minimal immunosuppression with a mild varicella may recover without intervention. However, treatment with acyclovir is the most common standard of care. Acyclovir is typically given intravenously until lesions are crusted and no new lesions have developed. The remainder of the treatment course can be given orally.


What Happens if My Child Gets Fifth Disease?


Fifth disease is a common childhood illness caused by human parvovirus (PV B19). Most transplant recipients handle PV B19 like their immunocompetent peers. However, a small number of patients may develop hematologic complications such as aplastic anemia, leucopenia, and thrombocytopenia. Screening for PV B19 is therefore important in an immunocompromised SOT recipient who presents with severe, unexplained, or prolonged anemia.


There is no treatment required for uncomplicated PV B19 in the transplant recipient. Intravenous immunoglobulin has been shown to neutralize the virus, thus reducing the viral load and is the treatment of choice in PV B19 disease with associated severe persistent anemia.


Are There Any Important Differences in Dental Care for Children Who are Transplant Recipients?


Oral hygiene and preventative dental care routines for children following organ transplantation should follow the same guidelines as for the general population. Gingival hyperplasia is seen in patients who are on cyclosporine-based immunosuppression and is more common in children. A soft toothbrush can be used to avoid bleeding gums and routine dental examinations should be scheduled to assess gum overgrowth and complications. In some cases, surgery may be required for tissue reduction to decrease infection and for an improved appearance.


Oral candidiasis is another potential complication after transplant and may develop during periods of higher immunosuppression. Candidiasis is usually treated with nystatin oral suspension. Resistant candidasis may require oral fluconazole, although this treatment usually increases serum levels of tacrolimus and cyclosporine and requires close monitoring of trough levels of these medications.


Oral ulceration induced by medication (eg, sirolimus) or infection (eg, herpes simplex) should be addressed based on the likely cause. Antibiotic prophylaxis before invasive dental work is controversial and there are few guidelines and no clinical trials that address appropriate care for transplant recipients. The American Heart Association’s standard regimen for endocarditis prophylaxis can be used as a guideline ( http://www.americanheart.org ).

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Oct 3, 2017 | Posted by in PEDIATRICS | Comments Off on Most Commonly Asked Questions from Parents of Pediatric Transplant Recipients

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