Most commonly asked questions from parents of pediatric transplant recipients

M o s t C o m m o n l yA s k e d Q u e s t i o n s f ro mP a re n t s o f P e d i a t r i cTr a n s p l a n t R e c i p i e n t s  Pediatric solid-organ transplant  Immunosuppression Growth and development  Quality of life This article provides brief responses to many of the questions commonly asked bychildren and their parents after organ transplantation. This is by no means a completelist of commonly asked questions but an attempt to address those that have implica-tions specifically related to transplantation. Individual transplant center guidelines mayvary and consultation with the patients’ transplant team is important. From a list ofmore than 40 questions generated by the authors’ clinical experience more than 25are included here. As with other chronic illnesses, children and parents may have diffi-culty attributing certain behaviors to normal growth and development versus the trans-plant. Counseling regarding issues such as discipline and sleep disturbance, forexample, should be guided by general principles of parenting a child with a chronicillness.
a Liver and Intestinal Transplant Program, Transplant Centre, The Hospital for Sick Children, 555University Avenue, Toronto M5G 1X8, Canadab Heart Transplant Program, Transplant Centre, The Hospital for Sick Children, 555 UniversityAvenue, Toronto M5G 1X8, Canadac Renal Transplant Program, Transplant Centre, The Hospital for Sick Children, 555 UniversityAvenue, Toronto M5G 1X8, Canadad Department of Transplant Surgery, Starzl Transplantation Institute, Children’s Hospital ofPittsburgh of UPMC, Faculty Pavillion, 6B 45th street and Penn Avenue 15524 Pittsburgh, PA,USA* Corresponding author.
E-mail address: Pediatr Clin N Am 57 (2010) 611–622doi:10.1016/j.pcl.2010.01.010 0031-3955/10/$ – see front matter ª 2010 Published by Elsevier Inc.
RECOVERING FROM TRANSPLANTWhen Can My Child Return to School After Transplant? Transplant center recommendations regarding the return to school after transplantvaries from a few weeks to up to 3 months. The intent of this recommendation isthat the child is healthy and on baseline or near baseline levels of immunosuppressionby the time they return to school so that they are not at undue risk of infection.Manychildren are ready to return to school within a few weeks of their transplant. It is impor-tant for children to resume normal activities and be with Transplant recipients typically tolerate common community-acquired infections, however, exposure to certain viruses such as varicella or measles necessitatesprophylactic treatment of the transplant Parents should alert school staffto 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 theguiding principles are similar to returning to school. The child should feel well enoughto cope with the daycare setting and immunosuppression should be near baselinelevels so that the child is not at undue risk of Daycare staff should be awareof 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 chil-dren after solid-organ transplantation (SOT). Regular exercise helps to maintaina healthy body weight, improves endurance and flexibility, and can contribute to animproved quality of After the early transplant period when wound healing iscomplete, there are few restrictions related to exercise. Some renal transplant centersrecommend avoidance of activity that could result in a direct hit to the transplantedUse of protective equipment may mitigate some of this risk for childrenwho intend to play contact sports, however the literature in this area is sparse. Hearttransplant recipients experience slower heart rate increases with exercise and slowerreturn to baseline heart rate after exercise as a result of autonomic denervation of thetransplanted Pediatric heart transplant recipients participating in competitivesports will benefit from warm-up and cool-down routines to assist in modulation oftheir 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 againstparticipating in contact sports until bone density is improved. Moderate weight-bearing exercise should be encouraged to improve bone density. Appropriate activi-ties 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 transplantathletes, the success of transplant surgery, and the need for organ donation.Partic-ipation in these events can be a positive experience for transplant recipients and their IMMUNOSUPPRESSION AND OTHER MEDICATIONSWhat Happens When My Child Has Organ Rejection? Organ rejection is the result of the body’s attempt to attack tissue that is recognizedas foreign. Transplant recipients take immunosuppression medications to suppressor fool the body into accepting the transplanted organ. Most transplant recipients Commonly Asked Questions After Pediatric Transplant will have some organ rejection. This is most common early after the transplant butcan happen at any time. Patients and parents can do their part to help prevent rejec-tion by ensuring that immunosuppression medications are taken precisely asprescribed.
The transplant team often detects signs of rejection through laboratory tests and routine biopsies long before physical symptoms are noticed. Detection of rejectionmeans that immunosuppression medications need adjustment. In most cases, thisis successful in treating the rejection. Please refer to organ-specific articles in thisissue 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 severalfactors including but not limited to time from transplant, previous levels, concurrentinfection, 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 guidelineshave been created based on review of population pharmacokinetic characteristicsof the immunosuppressants. Doses vomited more than an hour from the time ofadministration do not need to be repeated ).
If My Child Has a Fever Can They Take Acetaminophen and/or Ibuprofen? In general, transplant recipients may take acetaminophen for fever or pain accordingto the manufacturer’s dose guidelines. Patients with liver dysfunction may requirea decreased dose of acetaminophen and these patients should consult their trans-plant team. Ibuprofen and nonsteroidal antiinflammatory drugs are discouraged andrequire consultation from the transplant center because of potential renal impairment.
After consultation with the transplant center, some patients without renal impairmentmay be permitted occasional doses of ibuprofen. Prolonged fever and/or a sick childwith 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 concurrentdoses.Health care professionals and transplant recipients should check with thetransplant center before starting a new medication to ensure no adverse interactionsare known. The same precautions should be taken with over-the-counter andprescription 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 importantsteps. In early adolescence, the young teen should begin preparing and self-adminis-trating medications with supervision. More complex tasks such as re-ordering medi-cations should be mastered by the time transition to adult health care setting takesplace.
GENERAL MEDICAL CARE AND VACCINESWhat Is the Role of My Child’s Pediatrician and Family Doctor? The pediatrician or family doctor will collaborate with the transplant team. Your childshould be seen by their pediatrician or family doctor for routine immunizations, moni-toring of growth and development, and initial assessment of illnesses. The pediatricianor family doctor is key in the initial examination and medical plan for a transplant recip-ient with acute illness and other long-standing health issues. There are many commonchildhood illnesses that will also affect the transplant patient and the pediatrician canexamine and determine the appropriate steps for treatment. Fevers, coughs, sorethroat, ear aches, obesity, and difficulty paying attention in school are some examplesof health issues that the pediatrician or family doctor can assess initially and treat. Ifthe acute issue does not resolve or worsens, the pediatrician or family doctor maycontact the transplant center for further discussion.
The transplant center is always there as a resource and can be called for direction ifuncertain about who to call. If there are questions about immunosuppression thetransplant center is a first contact. Acute issues that may necessitate a call to thetransplant will vary for each organ group. Some examples include jaundice in the livertransplant patient, decreased spirometry readings in the lung transplant patient, andblood in the urine for the renal transplant recipient. One is always encouraged tocall 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 routinevaccines before transplant according to national immunization guidelines. The useof live vaccines should be discussed with the transplant team before transplant asdeferral 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 organtransplantation. Posttransplantation immunosuppression interferes with the immuneresponses that are needed for successful immunization. There are limited dataregarding the exact timing of vaccination after transplant, however the generalconsensus is that vaccination can resume approximately 6 months following trans-plantation, 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 ofacquiring disease from a live Siblings and household contacts can receivelive virus vaccines without risk to the transplant recipient, however oral polio vaccineshould be avoided because of possible viral shedding after administration. There may Commonly Asked Questions After Pediatric Transplant 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 patientshave minimal complications from the disease, however, there is a risk of disseminatedinfection. Prophylaxis with varicella zoster immunoglobulin is recommended within 96hours of exposure to varicella to prevent or ameliorate the disease.
Some transplant recipients on minimal immunosuppression with a mild varicella may recover without However, treatment with acyclovir is the mostcommon standard of care. Acyclovir is typically given intravenously until lesions arecrusted and no new lesions have developed. The remainder of the treatment coursecan be given 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 suchas aplastic anemia, leucopenia, and Screening for PV B19 istherefore important in an immunocompromised SOT recipient who presents withsevere, unexplained, or prolonged There is no treatment required for uncomplicated PV B19 in the transplant recipient.
Intravenous immunoglobulin has been shown to neutralize the virus, thus reducing theviral load and is the treatment of choice in PV B19 disease with associated severepersistent anemia.
Are There Any Important Differences in Dental Care for ChildrenWho are Transplant Recipients? Oral hygiene and preventative dental care routines for children following organ trans-plantation should follow the same guidelines as for the general population. Gingivalhyperplasia is seen in patients who are on cyclosporine-based immunosuppressionand is more common in A soft toothbrush can be used to avoid bleedinggums and routine dental examinations should be scheduled to assess gum over-growth and complications. In some cases, surgery may be required for tissue reduc-tion 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 withnystatin oral suspension. Resistant candidasis may require oral fluconazole, althoughthis treatment usually increases serum levels of tacrolimus and cyclosporine andrequires 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 beforeinvasive dental work is controversial and there are few guidelines and no clinical trialsthat address appropriate care for transplant recipients. The American Heart Associa-tion’s standard regimen for endocarditis prophylaxis can be used as a guideline GENERAL QUALITY OF LIFEDoes My Child Have Dietary Restrictions After Transplant? Most transplant recipients have no dietary restrictions and a healthy diet based onnational guidelines is Some children may have restrictions related to their individual circumstances (eg, low potassium diet for children with hyperkale-mia related to renal dysfunction). Transplant recipients should avoid grapefruit andgrapefruit juice as it is an inhibitor of calcineurin metabolism (eg, tacrolimus, cyclo-sporine) and can contribute to high serum levels of these medications.Other citrusfruits do not have this effect and are safe to eat.
Some transplant centers may recommend avoiding foods perceived to have increased risk for food-borne bacteria such as unpasteurized cheese. There is littleevidence for the benefit of this practice and food guidelines are variable from one insti-tution to another.Safe food storage, handling, and cooking practices are importantin preventing food-borne illness for SOT recipients.
Will Transplantation Affect My Child’s Sleep Patterns? Some pretransplant conditions such as pruritus in liver failure or breathing problems inchronic lung disease may hinder sleep; sleep disturbance after transplant is morelikely to be related to anxiety or behavioral Having a transplant is notspecifically associated with sleep problems but hospitalizations, anxiety about diag-nostic tests, or other parts of the health care regimen can contribute to disruption insleep patterns. Parents and children should be encouraged to practice regular sleeproutines including a consistent bedtime routine (eg, regular bedtime, bath, stories,quiet talking, or music) and a quiet sleep environment. Daily exercise and avoidanceof caffeine can also improve sleep.
Can My Child Have a Pet After Transplant? Most pets do not seem to present a major health risk to a child who is immunosup-With good hygiene practices, health maintenance, proper handling, andcommon sense practices, the transplant recipient should be able to experience thebenefits of having a pet. Transplant recipients should be encouraged to wash theirhands well after petting and playing with pets or other animals, particularly beforeeating and handling food. Pet’s health maintenance is equally important. Pets shouldhave routine examinations and immunizations as recommended by the veterinarian. Ifthe pet is ill, it should be seen by a veterinarian as soon as possible.
Some transplant centers may recommend avoiding reptiles, which are at higher risk of carrying salmonellosis. Some transplant centers also recommend that amphibians(frogs), hamsters, guinea pigs, and caged birds are not kept as pets in the home. Addi-tional information on caring for common pets after transplant can be found at theCenters for Disease Control Web site at Our Family Wants to Go on Vacation. Can My Child Travel After Their Transplant? Transplant recipients can travel with a few common sense precautions.
 Purchase adequate travel insurance to ensure coverage of expenses if the transplant recipient or other family member becomes ill when traveling.
 Bring all medications needed during travel plus a few extra doses in case medication is spilled or vomited. Keep medications with you at all times; donot put them in checked luggage.
 Determine if additional vaccinations are needed for travel to a particular area.
Assessment through an Infectious Disease Travel Clinic should be considered.
Vaccination recommendations should be reviewed by the transplant center asnot all vaccinations (eg, live virus vaccines) are indicated after Commonly Asked Questions After Pediatric Transplant Transplant recipients and their families should follow other common precautions during travel with respect to food safety and hygiene. Family travel or travel for busi-ness or school is part of achieving optimal quality of life after transplant and should beencouraged and facilitated.
Will My Child Get Cancer After Transplant? Immunosuppression promotes acceptance of the allograft by the SOT recipients, butit also increases the risk of malignancy.Malignancy after pediatric SOT transplanta-tion is most commonly related to Epstein-Barr virus (EBV) infection through eithera primary infection or reactivation of latent EBV. EBV infection can cause proliferation,and in some cases malignant transformation, of lymphoid tissue resulting in posttrans-plant lymphoproliferative disease (PTLD).
PTLD can range from mild EBV disease to lymphoma. Treatment may involve anti- viral agents for simple EBV disease or chemotherapy for lymphoma.The incidenceof PTLD varies based on the EBV status of the organ donor and recipient, degree ofimmunosuppression, type of organ transplantation, and elapsed time after transplant.
The frequency ranges between 4% and 20%.PTLD has many possible manifesta-tions. Nonspecific signs and symptoms such as malaise, recurrent fever withoutcause, nausea, vomiting, diarrhea, weight loss, and adenopathy are cues that oftenlead to further investigation for Although actual malignancy is not typically seen until adulthood, the risk of skin cancer is increased for SOT recipients.Use of sun screen and avoidance of pro-longed unnecessary sun exposure are common measures recommended to reducethe risk of skin cancer.
GROWTH AND DEVELOPMENTMy Child has been Through So Much. What is the Best Way to DisciplineMy Child After Transplantation? Discipline is an important part of the ongoing development of a child after trans-plantation. As with many parents of children who have faced a life-threateningillness, parents of transplant recipients may be over protective of their child orover lenient in their behavioral expectations.Both of these approaches willhinder the development of positive behavior and coping skills in the pediatric trans-plant recipient. For example, a child who is not expected to follow family rules mayhave more difficulty adjusting to school routines. By the same token, a child who iskept home from peer-social events misses the opportunity to build independenceand social skills. Parents should be encouraged to provide fair consistent disciplinefor their child.
Normal growth patterns are the goal after transplantation. However, there aremultiple factors involved in the individual’s ability to attain age-matched lineargrowth. Before transplant, end-stage organ failure often leads to malnutritionbecause of increased energy needs, malabsorption, and anorexia. Posttransplantgrowth is affected by organ function, age at transplant, steroid use, and transplantHeight and weight generally increase after transplant. Catch upgrowth can occur but height remains reduced in a percentage of transplant patientscompared with their There is increasing awareness of the importance of bone health in the child after transplant. Many children experience poor bone mineral density related to pretrans-plant chronic illness and immunosuppressive medications. Ensuring adequate dietary calcium and vitamin D intake as well as weight-bearing exercise will help to optimizebone health.
Will My Child Experience Developmental Delay/Normal Cognitive Development? Most transplant patients without prior neurologic injury will continue to developappropriately. Individual differences in illness trajectory and transplant complica-tions may affect neurologic development. Most pediatric transplant recipientsattend school and participate in all aspects of the curriculum. In the limitedresearch available, most pediatric transplant recipients fall into the normal orlow-normal range for cognitive aSome children will benefit from neurode-velopmental assessment and an education plan tailored to their needs andstrengths.
ENTERING ADOLESCENCEWhat Is the Best Approach to the Treatment of Acne After Transplantation? Acne is a difficult outward sign of pubertal growth for many teenagers. For some teen-agers with transplants, steroids and sirolimus may accentuate this normal process.
Treatment options are the same as those recommended by the Expert Committeefor Acne Topical antibiotics, retinoids, and benzyl peroxide can allbe used. Oral antibiotics can be used with the exception of oral macrolides as theyinteract with immunosuppressant medications (see section on medication). Hormonaltherapy should be reviewed based on patient risk factors such as hypertension, andcoronary artery disease may preclude their use.
Can My Child Become Pregnant or Father a Child? Female transplant recipients can become pregnant and male transplant recipients canfather children. Prepregnancy planning is essential to ensure appropriate immunosup-pression, stable graft function, and good general health.Immunosuppression mayneed to be altered before pregnancy as the safety of mycophenolate mofetil and siro-limus in pregnancy is not established. However, pregnancies fathered by male trans-plant recipients taking these medications have outcomes similar to the generalpopulation.Although pregnancy in the SOT recipient is considered high risk, ina well-planned stable situation, many common risks of pregnancy are similar to thegeneral population.
Unplanned pregnancy in the transplant recipient poses risks for mother and baby. Adolescent transplant recipients should receive information and the opportu-nity to discuss birth control measures. Barrier methods and low-dose oral contra-ceptives can be consideredbut should be selected in the context of theadolescents’ clinical status and individual preferences. Regardless of birth controlmethod, condom use to prevent sexually transmitted infection should beadvocated.
What if My Child Experiments with Smoking, Alcohol, or Nonprescription Drugs? Risk-taking behaviors are a common feature of adolescence. Data are limited butinformation regarding the dangers of smoking, alcohol, and illicit drugs for the trans-plant patient should be provided. The risks of cigarette smoking are well known.
Alcohol is a diuretic that can lead to difficulty in maintaining hydration. Marijuanasmoking can lead to lung infections with Aspergillus (mold). Parents and health careproviders can provide information, support, counseling, and intervention if needed(see the article by Kaufman and colleagues elsewhere in this issue for further explana-tion of this topic).
Commonly Asked Questions After Pediatric Transplant I’m Worried That My Child Will Want to Get a Tattoo or Have Body Piercing Many transplant centers indicate that tattooing and piercing should be discouraged intransplant recipients. Immunosuppression increases the risk of infectious complica-tions with these procedures. However, because some transplant recipients maypursue these procedures, information about tattooing and piercing should beprovided during routine visits and reinforced as needed. If the patient intends onobtaining a tattoo or piercing, licensed facilities with ideal safety procedures shouldbe advocated and adherence to follow-up appointments and care for any complica-tions should be stressed.
How Will my Child’s Care Change During Adolescence? Will They AlwaysBe a Pediatric Patient? Transition from pediatric to adult care is an important process for adolescent SOTrecipients. An international consensus statement emphasizes the importance of earlypreparation for transitioning the child and family to adult care.Although, 10 to 14years of age is recommended as a starting point for a transition program, the timingshould be individualized based on the adolescent’s developmental level and familycharacteristics. Adolescents can become increasingly involved with their care withactivities including scheduling of follow-up appointments, calling the pharmacy forrepeat prescriptions, discussing laboratory results with their transplant team, orattending clinic independently.
Insurance coverage and special health care issues should be explored before tran- sition to highlight of the implications of transition to an adult setting, particularly in theUnited States. It is important that this is done early to avoid lapses in insurance Pediatric SOT recipients and their parents are often challenged to cope with newtransplant regimens as well as common situations in the context of organ transplan-tation. Health care professionals will receive questions from parents and childrenregarding clinical transplant care as well as general pediatric concerns that seem unfa-miliar to families now that their child has a transplant. The literature is limited in someareas of pediatric care after SOT, and there is little guidance for the health care prac-titioner. To help address gaps in the literature and provide guidance for health careprofessionals, this article reviews some of the most commonly asked questionsregarding general care after SOT, parenting the child with a chronic illness, and growthand development. The answers provided stem from the literature in part but also thecombined clinical experiences of transplant centers that over time have moved towarddecreased limitations and full social integration.
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