Seven lessons I ’ve learned from Rett syndrome

As a mother of a child with Rett syndrome, a disability that affects the brain’s ability to plan or coordinate motor skills, the phrase “take for granted” takes on a whole new meaning. I cannot take for granted that Ava can recite her A, B, C’s or feed herself a snack or go to the bathroom on her own. Quite the opposite. Every day, I strive to properly appreciate the effort it takes for Ava to perform the most mundane tasks. I am the one being “schooled” on Rett syndrome. Here are seven of the things Rett syndrome has taught me: 1. Technology is seriously cool.  Ava doesn’t speak, but she can communicate. She uses a speech-generating device with eye-gaze technology that detects the box or symbol she is looking at on the screen and speaks the words it represents. The grid of symbols represent everyday activities, needs, expressions and feelings. It has been invaluable to be able to hear Ava’s “voice.” She navigates with so much ease it’s scary. 2. How to adapt. Rett girls engage in a stereotypical hand movement, like a hand-washing or wringing that renders their hands useless. You can break the pattern temporarily — hold one of her hands and she will focus on using the free hand to lift a fork to her mouth. But inevitably, the fork will be dropped as she tries to find that other hand. If she had hand use she could learn sign language. She could dress, feed, bathe and toilet herself. Yeah. This one hur...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Our Patients’ Stories rett syndrome Source Type: news

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Publication date: Available online 2 July 2020Source: International Journal of Gastronomy and Food ScienceAuthor(s): Patrícia Natielly de Oliveira, Paula Caroline dos Santos Gomes, André Ricardo Alcarde, Aline Marques Bortoletto, Maria Terezinha Santos Leite Neta, Narendra Narain, Ana Karla de Souza Abud, Antonio Martins de Oliveira Júnior
Source: International Journal of Gastronomy and Food Science - Category: Food Science Source Type: research
CONCLUSION: low-cost, handmade simulators are feasible and effective, resulting in positive learner evaluations. Their availability as open technology allows the dissemination of their use. PMID: 32609265 [PubMed - in process]
Source: Revista Latino-Americana de Enfermagem - Category: Nursing Authors: Tags: Rev Lat Am Enfermagem Source Type: research
Publication date: Available online 3 July 2020Source: International Journal of Africa Nursing SciencesAuthor(s): Oluwaseyi Isaiah Olabisi, Olorunfemi Ola, Adetola Bolaji, Fatimah O. Azeez, Odunola Azeez, Tolulope Esther Olabisi
Source: International Journal of Africa Nursing Sciences - Category: African Health Source Type: research
In this study, it was demonstrated that both the variety and ripening stage have a significant impact on the aroma of mango. The volatile compound profile of “ Tommy Atkins ” , “ palmer ” , “ espada ” and “ Carlota ” varieties in green and ripe stages were characterized by headspace solid-phase microextraction gas chromatography mass spectrometry (HS-SPME/GC-MS). Thirty-three volatile compounds were identified, 30 from “ Tommy Atkins ” , 29 from “ espada ” , 25 from “ palmer ” and 10 from the “ Carlota ” variety. The major compo...
Source: Journal of the Brazilian Chemical Society - Category: Chemistry Source Type: research
In this study, we investigated the antiplasmodial activity of Q. grandiflora fruit and stem extracts against Plasmodium falciparum. The polar extracts of both fruits and stems showed promising in vitro antiplasmodial activity against sensitive and resistant P. falciparum strains (half-maximal inhibitory concentration (IC50) = 1.2 and 4.2 ng mL-1, respectively), low cytotoxicity against human hepatic cells (IC50HepG2 ≥ 400 ng mL-1), and a noteworthy selectivity index (SI ≥ 322 and ≥ 96, respectively). The fruit ethanolic extract revealed significant oral efficacy at 100 mg kg-1 in a mouse model of P. berghei malari...
Source: Journal of the Brazilian Chemical Society - Category: Chemistry Source Type: research
Conclusion: Most reports of violence against women recorded in health services were perpetrated by an intimate partner, especially physical, psychological and sexual violence. It was possible to identify factors associated with IPV such as age, education, pregnancy, occurrence at home, recurrence and alcohol consumption by the aggressor.
Source: Revista Brasileira de Epidemiologia - Category: Epidemiology Source Type: research
BACKGROUND: Orthopedic trauma patients have the risk to experience mental disorders, including depression, anxiety, post-traumatic stress disorder (PTSD), and other mental disorders. However, studies that analyze the relationship between mental disorders i...
Source: SafetyLit - Category: International Medicine & Public Health Tags: Economics of Injury and Safety, PTSD, Injury Outcomes Source Type: news
Abstract In 1994, community pharmacists first started patient-visiting services under health insurance coverage. There are a wide variety of home-care patients for whom pharmacists provide care. They include elderly patients with chronic disease, pediatric home-care patients with or without special needs, patients with dementia, cancer patients receiving palliative care, and others. Pharmacies engaging in home pharmaceutical care should establish an adequate system in terms of the following aspects: 1) number of pharmacists; 2) availability of a sterile dispensing room; 3) stock of medical narcotics; and 4) stock ...
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Source: Chemical and Pharmaceutical Bulletin - Category: Drugs & Pharmacology Authors: Tags: Chem Pharm Bull (Tokyo) Source Type: research
Conclusions: The results of this study suggest that maternal diet quality affects the fatty acid composition of breast milk.RESUMO Objetivo: Avaliar a rela ção entre a qualidade da dieta materna e a composição do leite humano em ácidos graxos no primeiro trimestre de lactação. Métodos: Trata-se de um estudo epidemiológico observacional e transversal com nutrizes. Os instrumentos de coleta dos dados foram questionário semiestruturado para ca racterização da amostra e o recordatório de ingestão habitual. A qualidade da dieta foi...
Source: Revista Paulista de Pediatria - Category: Pediatrics Source Type: research
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