Supplementation with carnitine reduces the severity of constipation: A retrospective study of patients with severe motor and intellectual disabilities
cerebral palsy; enteric feeding; clinical trial; endogenous compound; sex difference; human tissue; intellectual impairment; school child; preschool child; gene expression; medical record review; human; article; child; female; male; controlled study; adult; clinical article; young adult; hospital; middle aged; disease severity; retrospective study; body mass; cholesterol/ec [Endogenous Compound]; infantile spasm; neuronal ceroid lipofuscinosis; clobazam/dt [Drug Therapy]; clonazepam/dt [Drug Therapy]; carnitine; carnitine deficiency/dt [Drug Therapy]; carnitine/dt [Drug Therapy]; constipation; constipation/dt [Drug Therapy]; constipation/pc [Prevention]; diet supplementation; motor dysfunction; 102767-28-2 (levetiracetam); 1069-66-5 (valproic acid); 1309-48-4 (magnesium oxide); 1317-74-4 (magnesium oxide); 14093-02-8 (iron); 14378-32-6 (zinc); 146-22-5 (nitrazepam); 1622-61-3 (clonazepam); 22316-47-8 (clobazam); 298-46-4 (carbamazepine); 461-06-3 (carnitine); 50-06-6 (phenobarbital); 53858-86-9 (iron); 541-15-1 (carnitine); 56-99-5 (carnitine); 57-30-7 (phenobarbital); 57-88-5 (cholesterol); 59-30-3 (folic acid); 6484-89-5 (folic acid); 68291-97-4 (zonisamide); 7439-89-6 (iron); 7440-66-6 (zinc); 7782-49-2 (selenium); 8028-68-0 (phenobarbital); 8047-84-5 (carbamazepine); 84057-84-1 (lamotrigine); 99-66-1 (valproic acid); acute brain disease; albumin; albumin blood level; anticonvulsant therapy; bacterial meningitis; bed rest; brain infarction; carbamazepine/dt [Drug Therapy]; carnitine deficiency; carnitine deficiency/dt [Drug Therapy]; cholesterol blood level; constipation/dt [Drug Therapy]; copper blood level; cupric ion/ec [Endogenous Compound]; enema/dt [Drug Therapy]; epilepsy/dt [Drug Therapy]; folic acid; folic acid blood level; folic acid/ec [Endogenous Compound]; groups by age; iron blood level; iron/ec [Endogenous Compound]; lamotrigine/dt [Drug Therapy]; levetiracetam/dt [Drug Therapy]; magnesium oxide/dt [Drug Therapy]; nitrazepam/dt [Drug Therapy]; Pelizaeus Merzbacher disease; periventricular leukomalacia; phenobarbital/dt [Drug Therapy]; prealbumin; prealbumin/ec [Endogenous Compound]; selenium blood level; selenium/ec [Endogenous Compound]; trace element; tuberous sclerosis; valproic acid; valproic acid/dt [Drug Therapy]; zinc/ec [Endogenous Compound]; zonisamide/dt [Drug Therapy]; constipation; NCL3; Pelizaeus- Merzbacher disease; tuberous sclerosis; West syndrome; pharmacologic intervention; Carnitine
Carnitine is an essential nutrient for the mitochondrial transport of fatty acids. Carnitine deficiency causes a variety of symptoms in multiple organs. Patients with severe motor and intellectual disabilities often have carnitine deficiency. This study aimed to determine the correlation between constipation and carnitine deficiency in them. Patients with severe motor and intellectual disabilities at our hospital were retrospectively reviewed. The correlation between level of free carnitine and severity of constipation was examined. Constipation and non-constipation groups were compared for age; sex; body mass index; bed rest period; use of anti-epileptic drugs, valproate sodium, or enteral nutrition; and serum levels of albumin, pre-albumin, totalcholesterol, free carnitine, folic acid, and trace elements. Moreover, severity of constipation before and after carnitine supplementation was assessed. Twenty-seven patients were enrolled. Of these, 14 were assigned to the constipation group and 13 to the non-constipation group. The free carnitine level was significantly correlated with severity of constipation (R = 0.7604, p<0.01). Free carnitine was significantly lower in the constipation compared with the non-constipation group (p<0.01). No other significant differences between the groups were found. The severity of constipation was significantly relieved after carnitine supplementation (p<0.001). In conclusion, carnitine supplementation could reduce the severity of constipation. Copyright © 2017 JCBN.
Murata S; Inoue K; Aomatsu T; Yoden A; Tamai H
Journal of Clinical Biochemistry and Nutrition
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3164/jcbn.16-52" target="_blank" rel="noreferrer noopener">10.3164/jcbn.16-52</a>
Challenges in receiving research ethics committee approval for studies involving children and young people with life-limiting conditions and life-threatening illnesses: Analysis of research ethics committee minutes and correspondence with principle investigators
documentation; scientist; cytochrome P450; endogenous compound; United Kingdom; conference abstract; human; child; peer review; attention; error; research ethics; writing; 9035-51-2 (cytochrome P450)
Background Research ethics committees (RECs) are identified as one of the biggest barriers to research with vulnerable populations, such as children and young people with life-limiting conditions or life-threatening illnesses (CYP with LLC/LTI). Despite this, REC concerns for research with this population and their correspondence with principle investigators during the research approval process remains unknown. The aim is to explore the challenges in receiving REC approval for studies involving CYP with LLC/LTIs, focusing on the primary concerns of the REC and the ways these are addressed by the research team. Methods Analysis of REC meeting minutes, REC decision letters, and researcher response letters were conducted for all studies involving CYP with LLC/LTIs reviewed in the United Kingdom between March 2011-2016. Results REC meeting minutes and decision letters were received for 77 studies, with 27 researcher response letters provided. Though most REC concerns were general, relating to participant information sheets, methodological issues, or formatting errors, a number of concerns specific to CYP with LLC/LTIs were also identified, such as the age of consent/ assent or the need to involve clinical teams in recruitment. Overall, RECs raised 279 concerns in their correspondence with investigators, most of which resulted in changes to research methods or documentation. Conclusions Research protocols involving CYP with LLC/LTIs usually require multiple changes before REC approval is given. Many of the main REC concerns, such as formatting issues or insufficient detail, can be easily resolved with attention to detail or peer review prior to submission. Others, such as recruitment methods or consent procedures, require more detailed consideration of study methods to ensure they appropriately consider the needs of CYP with LLC/LTIs. Understanding REC concerns may help researchers consider potential issues more thoroughly before submission, reducing the impact of RECs as a barrier and improving research quality overall.
Butler A E; Vincent K; Bluebond-Langner M
Archives of Disease in Childhood
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/goshabs.46" target="_blank" rel="noreferrer noopener"> 10.1136/goshabs.46</a>
Improving communication within multi-disciplinary teams in children with life limiting conditions
Multidisciplinary team;Child;conference abstract;constitutive androstane receptor;death;endogenous compound;Human;intensivist;nurse;Palliative therapy;patient referral
Aims & Objectives: 60% of children admitted to RMCH PICU might benefit from palliative care (previous case review). Co-coordinating and maintaining continuity of care in these children with multi-speciality input is challenging. Weekly Multi disciplinary Team Meeting (MDT) and follow up was introduced in PICU to improve care in this cohort. Methods Weekly MDT meeting (co-located specialist teams, Intensivists, palliative care consultant, family liaison nurses) were held over a year. Spectrum of Palliative Care Needs was used to 1. Recognise children who might benefit from palliative care 2. Identify need for MDT/Lead consultant/End of life discussions if not already done 3. Update community and specialist teams 4. Discuss/Review advanced care plan (ACP). Results Actions from 32 MDTs were analysed (minimum 2 meetings monthly) in children with palliative care needs (62%). Actions that had to take place within the hospital were completed: Liaising with specialist nurses: 7; Initiating ACP: 4; Identifying ICU lead: 16; Recognising need for end of life discussions, planning for death and place of death: 14; referral to in-house palliative care team: 17; Organising MDT: 11. However only 44% of local teams (outside hospital) were contacted (action that involved teams outside the hospital) and feedback from local teams after discharge was inconsistent. Conclusions Weekly MDT meetings to identify children who might benefit from palliative care are a good start to improving communication and maintaining continuity of care. More initiatives need to be taken by the intensivists in speciality hospitals to improve communication with the wider network of professionals looking after children with life limiting conditions.
Subramanian G;Consterdine K;Kauffmann L
Pediatric Critical Care Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/01.pcc.0000537863.07170.4e" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537863.07170.4e</a>
Neurodegenerative conditions: Exploring the role of music to enhance speech and cognitive functioning in children with batten disease
Music Therapy; neuronal ceroid lipofuscinosis; speech; Child; cohort analysis; endogenous compound; Female; Human; Language; Male; Mood; Perception; singing; Teaching
Batten disease, the most common form of the neuronal ceroid lipofuscinoses, is a genetic life-limiting neurodegenerative condition that presents as early-onset dementia in children (Mole, Williams and Goebel, 2011). Symptoms include blind-ness, epilepsy, hallucinations, memory loss, the decline of speech, language and swallowing abilities, and the catastrophic deterioration of fine and gross motor skills (Bills et al., 1998). In a recent European research initiative led by Bengt Elmerskog (National Resource Centre for VI, Norway), exploring educational and therapeutic strategies for children with Batten disease, parents reported that music plays an increasingly significant role in their children's lives as the disease progresses. Evidence investigating the effects of music on neurological conditions has highlighted important links between music perception and speech, language, cognition and movement (Zatorre, 2013, Magee, 2017). This presentation will illustrate initial findings from two studies currently in train at the Applied Music Research Centre at the University of Roehampton. The first is following a cohort of 12 children and young people with Batten disease (CLN2, CLN3, CLN5, CLN 6 and CLN8) over a period of three years, to ascertain the extent to which weekly musical interventions and music therapy may have the capacity to regulate speech, control movement, enhance mood and promote social interac-tion. The second, doctoral study, which focuses on CLN3, the juvenile form of Batten disease, explores how singing may facilitate the production of expressive language when speech is in decline through (a) encouraging patients to learn the benefits of melodic intonation and rhythmic speaking techniques, and (b) teaching patients a repertoire of 'micro-songs', that embody key functional language. It is proposed that techniques may help scaffold language and everyday speech and, subsequently, maintain functional speech and communication for longer.
2017
Ockelford A; Atkinson R
Developmental Medicine And Child Neurology
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/dmcn.13623" target="_blank" rel="noreferrer">10.1111/dmcn.13623</a>
"His ears are so soft!" Animal-assisted interventions in oncology settings: Implications for oncology social work practice
Clinical Practice; Ear; Oncology; Skill; Social Work Practice; 50-56-6 (oxytocin); 51-61-6 (dopamine); 62-31-7 (dopamine); 54577-94-5 (oxytocin); 60118-07-2 (endorphin); Adult; Animal Experiment; Animal Model; Anxiety; Blood Pressure; Cancer Patient; Cancer Therapy; Cerebrovascular Accident; Distress Syndrome; Dog; Dopamine; Endogenous Compound; Endorphin; Family Study; Female; Gene Expression; Happiness; Heart Rate; Hospice; Hospital Patient; Human; Human Versus Animal Comparison; Infusion; Male; Narrative; Nonhuman; Oxytocin; Pain; Palliative Therapy; Pet Therapy; Program Development; Recreation; Social Support; Storytelling; Symptom; Total Quality Management; Trust; Volunteer; Waiting Room
Content: The use of recreational, expressive, and integrative methods of providing supportive care to patients and families coping with cancer is growing in cancer treatment settings. One such method is animal-assisted interventions (AAI). From the clinic to the infusion suite, to the palliative care office, and to the inpatient hospice, the presence of therapy animals provides an another layer of therapeutic intervention to assist in coping with cancer. AAI can provide cancer patients with an opportunity for emotional support, diversion, recreation, sensory integration/tactile benefit, social support, companionship, and relief of distress and symptoms including pain, depression, anxiety, and isolation. Research also suggests that the simple act of petting a dog can lower heart rate and blood pressure (Friedman, 2015), as well as increase levels of oxytocin, dopamine, and endorphins (Uyemura, 2013). Oxytocin influences happiness and trust in individuals. "Oxytocin has some powerful effects for us in the body's ability to be in a state of readiness to heal.so it predisposes us to an environment in our bodies where we can be healthier" (http://www.npr.org/sections/health-shots/2012/03/09/146583986/ pet-therapy-how-animals-and-humans-heal-each-other). In addition, the therapy animal serves as a vehicle of communication, narrative, and storytelling. Imagine a patient sitting anxiously in the waiting room. He or she strokes the therapy dog gently and is taken to another time and place without cancer. He or she reflects on his or her own dog's roles in his or her life, how he or she rescued the dog, plays with the dog, sleeps with the dog. He or she is distracted, relaxed, and utilizing his or her own story to invoke feelings of happiness, normalcy, and hope. This presentation will examine the history, function, and roles of animal-assisted therapy and activities in various settings. The benefits of AAI with cancer patients (both adults and children) as well as with oncology professionals will also be presented. AAI as a method of integrative supportive oncology therapy will be addressed. The benefits of AAI as well as barriers and limitations for these programs in oncology settings will be reviewed. We will explore AAI program development and evaluation through presentation of results from quality improvement surveys completed by program participants. Suggestions for program development, volunteer recruitment and retention, and therapy dog support will also be discussed. Case presentations of AAI in action from various oncology settings will be a highlight of this presentation.
Bach C
Journal Of Psychosocial Oncology
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/07347332.2016.1147913" target="_blank" rel="noreferrer">10.1080/07347332.2016.1147913</a>