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The many adventures of Wesley: Specialty care helps toddler with heart disease reach neurodevelopmental milestones

Will and Alicia Ethridge knew their unborn son would need complex open-heart surgery soon after birth, due to a serious congenital defect that was detected in utero. Wesley suffered from a genetic form of cardiomyopathy, which meant the walls of his heart muscles were thickened, and blood flow to the left side of his body was restricted. The knowledge about their son’s disease prepared them for many things about the impending medical journey (including arranging for cardiac surgery at the Boston Children’s Hospital Heart Center, just a few hours’ drive from their home in Maine) but there were many more things about the months to come that they did not expect. Immediately after birth in October 2013, baby Wesley was transferred to the (CICU) at Boston Children’s. His case quickly became more complicated than anyone had anticipated. After Wesley’s initial surgery, he had five more, all before his second birthday. In February 2015, he fell critically ill and was listed for heart transplant. He received a new heart that May. While supporting their son through his various medical trials, Alicia and Will were simultaneously concerned about his neurological development. “There were very obvious delays right away,” says Alicia. Wesley was intubated during his first few weeks of life in the hospital, so he struggled with feeding for a while. Due to tightened muscles called contractures, he couldn’t raise his arms above his head, and...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Our Patients’ Stories Cardiac Neurodevelopmental Program Dr. Caitlin Rollins Dr. Samantha Butler Heart Center Source Type: news

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AbstractPrimary graft failure can be a cause of early morbidity and mortality after allogeneic hematopoietic stem cell transplantation (HSCT), as it leads to a high risk of severe infections and bleeding. Splenomegaly is associated with primary graft failure in patients of myelofibrosis, but the association between splenomegaly and outcomes after HSCT in patients with myeloid malignancies has not been previously evaluated. The aim of this study was to investigate the effect of spleen volume on engraftment kinetics in patients with acute myeloid leukemia (AML) and myelodysplastic syndrome (MDS). We enrolled 85 patients. The...
Source: Annals of Hematology - Category: Hematology Source Type: research
AbstractIn our retrospective study, 16 patients affected by advanced cutaneous T cell lymphoma (CTCL) underwent allogeneic hematopoietic stem cell transplantation (HSCT). Two patients (12.5%) were in complete remission (CR), nine (56.3%) in partial remission (PR), and five (31.2%) with active disease. The patients were transplanted from an HLA-identical (n = 7) from a mismatched (n = 1) or haploidentical (n = 1) sibling, from matched unrelated donor (n = 5), or from a single cord blood unit (n = 2). Conditioning regimen was standard myeloablative in 6 pa...
Source: Annals of Hematology - Category: Hematology Source Type: research
Source: Annals of Hematology - Category: Hematology Source Type: research
In this study, using multiparameter flow cytometry (FCM), we investigate the impact of minimal residual disease prior to transplantation (pre-MRD) on the transplant outcomes of AML patients with fms-related tyrosine kinase 3 (FLT3)-internal tandem duplication (ITD) mutation. A total of 20 patients who received HLA-matched sibling donor transplantation (MSDT) and 63 patients who received unmanipulated haploidentical hematopoietic stem cell transplantation (haplo-HSCT) were enrolled. Patients were classified into four groups based on the status of pre-FCM: group 1 with positive pre-FCM before MSDT, group 2 with negative pre-...
Source: Annals of Hematology - Category: Hematology Source Type: research
AbstractMixed phenotype acute leukemia (MPAL) is an uncommon diagnosis, representing only about 2 –5% of acute leukemia cases. The blast cells of MPAL express multilineage immunophenotypic markers and may have a shared B/T/myeloid phenotype. Due to historical ambiguity in the diagnosis of MPAL, the genetics and clinical features of this disease remain poorly characterized. Based on the 2008 an d 2016 World Health Organization classifications, myeloid lineage is best determined by presence of myeloperoxidase, while B and T lymphoid lineages are demonstrated by CD19 and cytoplasmic CD3 expression. MPAL typically carrie...
Source: Annals of Hematology - Category: Hematology Source Type: research
AbstractThe effect of immunomodulatory drugs (IMiDs) on serious infection remains uncertain. We therefore conducted a systematic review and meta-analysis to assess the possible impact of IMiDs on serious infection in patients with multiple myeloma (MM). We searched randomized controlled trials (RCTs) and observational studies from databases that addressed the effect of IMiDs on serious infection in patients with MM. We pooled data from RCTs and observational studies separately and used the GRADE approach to rate the quality of evidence. Rates in patients with individual IMiDs at different treatment status ranged from 7.00 ...
Source: Annals of Hematology - Category: Hematology Source Type: research
The finding by Remmler et  al1 that increased levels of interleukin 6 (IL6) predict 90-day and 1-year mortality in patients with end-stage liver disease is of high importance. In addition to its relevance for prognosis and timing of liver transplantation, we believe that the determination of IL6 levels could represent a pos sible target for therapy. Indeed, IL6 increases occur in autoimmune diseases, but more importantly is a consequence of infections. Viral causes of chronic liver diseases, such as hepatitis C and B viruses, now can be cured in a very high percentage of patients with the administration of antivirals.
Source: Clinical Gastroenterology and Hepatology - Category: Gastroenterology Authors: Tags: Letter to the Editor Source Type: research
Authors: Khoruts A PMID: 29667436 [PubMed - as supplied by publisher]
Source: Expert Review of Gastroenterology and Hepatology - Category: Gastroenterology Tags: Expert Rev Gastroenterol Hepatol Source Type: research
Roughly half of patients don ’ t take their high blood pressure medicine as they should, even though heart disease is the leading cause of death in America. Now, a drug test can flag whether a patient is taking the prescribed medication and is meant to spark a more truthful conversation between patient and doctor.Kaiser Health News
Source: Medscape Medical News Headlines - Category: Consumer Health News Tags: Cardiology News Source Type: news
The week of April 23-27 has been designated as National Pediatric Transplant Week.  This week is to bring attention to the great need for organ donations and to honor  donors and their families whose incredibly selfless gift has given someone the gift of life.While most of us will never experience the need for a transplant, there are many of us who know someone who has a debilitating condition such as kidney dialysis that are in need of a transplant.Right now there are almost 2,000 children on the national transplant list.  Those needing hearts, lungs, eyes, tissue, liver, kidney, or some other body part are...
Source: Pediatric Health Associates - Category: Pediatrics Tags: Volunteer Opportunities Source Type: news
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