Abstract:
:I was asked to write this article to share with medical professionals, my view as a parent with a child who has special needs and needs a transplant. It is a detailed story from a parent's point of view on what it is like to have a child with special needs with serious medical complications and how I went about finding and managing my daughter's care. I summarize my own personal experiences based on my years of planning for my daughter.
journal_name
Pediatr Transplantjournal_title
Pediatric transplantationauthors
Carney MTdoi
10.1111/petr.13906subject
Has Abstractpub_date
2021-02-01 00:00:00pages
e13906issue
1eissn
1397-3142issn
1399-3046journal_volume
25pub_type
杂志文章abstract::Graft-versus-host disease (GVHD) is related to considerable morbidity and mortality after allogeneic hematopoietic stem cell transplantation (HSCT). Cardiac complications associated with GVHD are uncommon, and coronary artery involvement is even more unusual. We report on a male pediatric patient with chronic GVHD who...
journal_title:Pediatric transplantation
pub_type:
doi:10.1111/petr.13474
更新日期:2019-08-01 00:00:00
abstract::In patients with myocytolysis detected in endomyocardial biopsy, there is a tendency towards a shift of ventricular electrical axes from normal to strain pattern on surface ECG. Their 12-lead signal-averaged electrocardiogram (SAECG) show a significant increase in filtered QRS duration (QRSD) compared with those with ...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2005.00384.x
更新日期:2005-12-01 00:00:00
abstract::DTI indices have been associated with cellular rejection in adult heart transplant recipients, but their predictive value in pediatric recipients is unknown. The purpose of this study was to evaluate DTI measures in the detection of cellular and AMR in pediatric heart transplant recipients. One hundred and forty-eight...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2007.00812.x
更新日期:2008-03-01 00:00:00
abstract::Anelloviruses are DNA viruses ubiquitously present in human blood. Due to their elevated levels in immunosuppressed patients, anellovirus levels have been proposed as a marker of immune status. We hypothesized that low anellovirus levels, reflecting relative immunocompetence, would be associated with adverse outcomes ...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13069
更新日期:2018-02-01 00:00:00
abstract::HHV type 6 has been reported with enhanced pathogenicity in immunocompromised patients. Herein, we report about a two-yr-old girl who experienced primary HHV 6 infection after liver transplantation. She clinically presented with graft rejection and necrotic hepatitis as well as high fever, pneumonitis with respiratory...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2010.01310.x
更新日期:2011-09-01 00:00:00
abstract::A standard treatment is yet to be established for steroid-refractory acute aGVHD following HSCT. The effects of MMF have not been well studied in children with aGVHD. We evaluated the effectiveness of oral MMF in 14 children with steroid-refractory aGVHD (grade II in one patient, grade III to IV in 13 patients). The m...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12545
更新日期:2015-09-01 00:00:00
abstract::Total body irradiation and high-dose chemotherapy, applied as a preparatory regimen for bone marrow transplantation (BMT) in children with acute lymphoblastic leukemia (ALL), are particularly hazardous to the gonads and, in addition, can impair hypothalamo pituitary-gonadal control. Longitudinal data on pubertal devel...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1034/j.1399-3046.1999.00006.x
更新日期:1999-02-01 00:00:00
abstract::The relationship between SES and outcomes surrounding pediatric cardiac transplantation is complex and influenced by recipient race. Broad-based studies of SES have not been performed. A retrospective review of all 5125 primary pediatric heart transplants performed in the United States between 2000 and 2011. Patients ...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12117
更新日期:2013-09-01 00:00:00
abstract::This study evaluated changes in growth parameters after pediatric heart transplantation and identified factors associated with the changes after pediatric heart transplantation (OHT). We retrospectively evaluated the somatic growth of 46 children <11 yr of age who underwent OHT for changes in weight, height, and BMI. ...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2007.00826.x
更新日期:2008-06-01 00:00:00
abstract::INFVA is an important cause of pulmonary infections in patients receiving BMT, and is associated with considerable morbidity and mortality for a readily preventable and treatable infection. Few studies have addressed the impact of the new neuraminidase inhibitors in the prognosis of influenza after BMT. The aim of thi...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2008.01114.x
更新日期:2010-03-01 00:00:00
abstract::Many pediatric centers utilize a variety of protocols including preemptive plasmapheresis to prevent the recurrence of FSGS post-transplant. But the effectiveness of this expensive, time-consuming process of plasmapheresis in the prevention of FSGS recurrence is still unclear. We retrospectively reviewed all pediatric...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13154
更新日期:2018-05-01 00:00:00
abstract::Major neurologic complications secondary to cyclosporine are well documented and are known to include confusion, cortical blindness, seizure, spasticity, paresis, ataxia and coma. Most previous reports attribute these to white matter central nervous system (CNS) lesions or white/grey matter border lesions. Many predis...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:
更新日期:1998-02-01 00:00:00
abstract::In areas of the world where human herpesvirus 8 (HHV-8) is endemic, Kaposi sarcoma (KS) is a common SOT-associated cancer. In the United States, where the virus is not prevalent, PTKS is rare, and there is little literature on pediatric PTKS. We present a North American female who underwent deceased donor, left latera...
journal_title:Pediatric transplantation
pub_type:
doi:10.1111/petr.13384
更新日期:2019-05-01 00:00:00
abstract::In 1999, our center implemented a policy of outpatient protocol biopsies as standard practice for the clinical management of pediatric renal allograft recipients. In order to determine the safety of this procedure, we conducted a retrospective chart audit of all outpatient renal allograft biopsies performed at our cen...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2006.00659.x
更新日期:2007-03-01 00:00:00
abstract::Combined enzyme replacement therapy (ERT) and stem cell transplant (SCT) were done for a two year old boy with severe Hurler syndrome(HS) with the aim to decrease transplant related complications. He tolerated both the procedures well without any major complications. Urine glycosaminoglycans (GAGs) decreased post-tran...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2007.00720.x
更新日期:2007-08-01 00:00:00
abstract::Vascular complications post-renal transplantation are not very common and can be associated with increased risk of graft loss. We report an unusual case of a young, female teenager with asymmetrical leg swelling. After one month of transplantation, the patient developed a rise in serum creatinine with right leg swelli...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2008.00941.x
更新日期:2008-09-01 00:00:00
abstract::Primary graft dysfunction following HTx is associated with significant morbidity and mortality. This study aimed to assess the incidence of, risk factors for, and outcomes of children requiring ECMO within 24 hours of HTx. This study utilized a linked PHIS/SRTR database of pediatric HTx recipients (2002-2016). Post-HT...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13414
更新日期:2019-06-01 00:00:00
abstract::Obscure gastrointestinal (GI) bleeding is defined as bleeding from the GI tract that persists or recurs, with no obvious etiology, after esophagogastroduodenoscopy (EGD), colonoscopy, and radiologic evaluation of the small bowel. We present the case of a 17-yr-old girl who for two years had been suffering from recurre...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2010.01425.x
更新日期:2012-05-01 00:00:00
abstract::Management of late humoral rejection remains challenging, and DSA may persist. A case report illustrates how individual DSA titers using solid-phase-based assays may help to assess for accommodation. A male cystinosis patient received a cadaveric renal transplant at the age of 12 yr with a daclizumab, tacrolimus, MMF,...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12242
更新日期:2014-06-01 00:00:00
abstract::We report the occurrence of epididymitis and orchitis 1 week after the onset of Listeriosis in an 11-month-old boy receiving an orthotopic liver transplantation for biliary atresia. Immunologic implications of Listeria monocytogenes-induced testicular inflammation are discussed, and the potential role of immunosuppres...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1034/j.1399-3046.2000.00113.x
更新日期:2000-05-01 00:00:00
abstract::Surgical techniques that have been used during liver transplantation (LT) together with patient's coagulation profile and institutional practices are reported to have an effect on transfusion requirements. The aim of this study is to evaluate the transfusion requirement in both cadaveric (CDLT, n = 22) and living dono...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2005.00284.x
更新日期:2005-06-01 00:00:00
abstract::A generic version of tacrolimus was approved for use in the USA in August 2009. These narrow therapeutic index generics are tested for bioequivalence only in adults. No data are available on generic tacrolimus levels in children with allografts. Four patients with stable renal allografts in our pediatric program were ...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2010.01393.x
更新日期:2010-12-01 00:00:00
abstract:BACKGROUND:No previous paediatric study has evaluated the frequency of diagnostic disagreement between clinical standard histopathological assessment (CSHA) and retrospective, independent, histopathological assessment (RIHA) of gastrointestinal Graft-Versus-Host Disease (GI-GVHD) METHODS: In a retrospective cohort stud...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13824
更新日期:2020-12-01 00:00:00
abstract::To identify the risk factors for new-onset seizures after pediatric LT and to assess their clinical implications and long-term prognosis. The clinical and laboratory data of 27 consecutive children who underwent LT from January 2007 to December 2010 in our center were analyzed retrospectively. Patients were divided in...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12198
更新日期:2014-02-01 00:00:00
abstract::Chronic rejection is the leading cause of graft loss following pediatric kidney transplantation. Our group and others have demonstrated an association between the development of Abs to self-antigens and chronic rejection following adult lung and heart transplantation. The goal of this study was to determine whether Ab...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12531
更新日期:2015-08-01 00:00:00
abstract::There is a limited supply of organs for all those who need them for survival. Thus, careful decisions must be made about who is listed for transplant. Studies show that manifesting genetic disease can impact listing eligibility. What has not yet been studied is the impact genetic risks for future disease have on a pat...
journal_title:Pediatric transplantation
pub_type: 杂志文章,多中心研究
doi:10.1111/petr.13402
更新日期:2019-06-01 00:00:00
abstract::DD kidney allocation protocols may influence timing of transplantation and graft quality for pediatric recipients. This study aimed to evaluate the effects of these protocols, including pediatric priority, on waiting time on dialysis, transplant type, donor age, and HLA matching according to state of transplant in Aus...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12544
更新日期:2015-09-01 00:00:00
abstract::Graft-vs-host disease (GVHD) is one of the most difficult problems in stem cell transplantation. It is best considered in the context of the normal immune response. The role of the immune system is to identify and eliminate foreign antigens. In the case of GVHD, the antigens are minor histocompatibility antigens (mHA)...
journal_title:Pediatric transplantation
pub_type: 杂志文章,评审
doi:10.1111/j.1399-3046.2005.00441.x
更新日期:2005-12-01 00:00:00
abstract::CEP is a rare inborn error of porphyrin-heme synthesis. Clinical manifestations can range from mild to severe and include erythrodontia, reddish-colored urine, and hemolytic anemia that can be mild or severe and may result in splenomegaly. Completely avoiding exposure to the sun is crucial. Attempts to reduce erythrop...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2007.00842.x
更新日期:2008-02-01 00:00:00
abstract::PTLD is a major complication after transplantation. Treatment options for PTLD are not standardized, usually sequential, starting with reduction in immunosuppression. Recently, we have used a dual combination of rituximab and reduced dose chemotherapy (R/C) directly after failed RI. We retrospectively identified 30 pe...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2010.01370.x
更新日期:2010-11-01 00:00:00