Parental perception of cold extremities and other accompanying symptoms in children with cerebral palsy
Child; Female; Humans; Male; Adult; Data Collection; Parents; Questionnaires; Health Status; adolescent; Preschool; Pain/etiology; Q3 Literature Search; Body Temperature/physiology; Cerebral Palsy/complications/physiopathology; Constipation/etiology; Extremities/blood supply/physiology; Muscle Tonus/physiology; Sleep Disorders/etiology
Cold extremities have been noted in non-walking children with cerebral damage compared with healthy controls. Whether this is a general problem in children with cerebral palsy (CP) and associated with other symptoms is unknown. This study describes accompanying symptoms such as cold extremities, constipation, pain, sleeping disorders and impaired well-being in children with CP as well as treatment the children have undergone. Associations between cold extremities and other symptoms borne by the children were analysed and discussed. From information in postal surveys received from parents of children with CP, 107 children (60 boys and 47 girls) aged 5-13 years, mean 11 years 8 months (SD 2 years 11 months), were described and analysed. Besides neurological impairments, many children had cold extremities and pain, sleeping disorders, constipation, and impaired well-being. Most children had had one or more of these symptoms for over 1 year but the symptoms were largely untreated. Non-walkers generally had more symptoms than walkers. Although pain, constipation, and sleeping disorders may have different underlying causes in children with CP, these symptoms might also be mediated or aggravated by dysfunction in the autonomic nervous system. To improve the child's well-being, early recognition and treatment of accompanying symptoms is important.
2008
Svedberg LE; Englund E; Malker H; Stener-Victorin E
European Journal Of Paediatric Neurology
2008
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).
Journal Article
<a href="http://doi.org/10.1016/j.ejpn.2007.06.004" target="_blank" rel="noreferrer">10.1016/j.ejpn.2007.06.004</a>
Clinical manifestation and natural course of late-onset Pompe's disease in 54 Dutch patients
Child; Humans; Adult; Prognosis; Aged; Middle Aged; Respiration; adolescent; Preschool; 80 and over; Pain/etiology; Q3 Literature Search; Age of Onset; Age Distribution; Artificial/utilization; Fatigue/etiology; Glycogen Storage Disease Type II/complications/diagnosis/rehabilitation; Movement Disorders/etiology; Respiration Disorders/etiology/therapy; Self-Help Devices/utilization
Late-onset Pompe's disease (acid maltase deficiency, glycogen storage disease type II) is a slowly progressive myopathy caused by deficiency of acid alpha-glucosidase. Current developments in enzyme replacement therapy require detailed knowledge of the kind and severity of symptoms and the natural course of the disease in the patient population. A detailed questionnaire covering the patients' medical history and current situation was developed and information was gathered from 54 Dutch patients. The mean age of the participants was 48.6 +/- 15.6 years. The first complaints started at a mean age of 28.1 +/- 14.3 years and were mostly related to mobility problems and limb-girdle weakness. Fifty-eight percent of the adult patients indicated the presence of mild muscular symptoms during childhood. Twenty-eight percent of the patients waited >5 years for the final diagnosis after the first visit to a physician for disease-related complaints. At the time of questionnaire completion, 48% of the study population used a wheelchair and 37% used artificial ventilation. Movements such as rising from an armchair, taking stairs or getting upright after bending over were difficult or impossible for more than two-thirds of the respondents. The age at onset, the rate of disease progression and the sequence of respiratory and skeletal muscle involvement varied substantially between patients. Seventy-six percent of the participants indicated being troubled by fatigue and 46% by pain. This survey has mapped the age at onset, presenting symptoms, heterogeneity in progression and range of disease severity in a large group of Dutch patients. We conclude that early manifestations in childhood require proper attention to prevent unnecessary delay of the diagnosis. The follow-up of patients with late-onset Pompe's disease should focus on respiratory and limb-girdle muscle function, the capacity to perform daily activities, and the presentation of fatigue and pain.
2005
Hagemans ML; Winkel LP; Van Doorn PA; Hop WJ; Loonen MC; Reuser AJ; Van der Ploeg AT
Brain
2005
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).
Journal Article
<a href="http://doi.org/10.1093/brain/awh384" target="_blank" rel="noreferrer">10.1093/brain/awh384</a>
Surviving cancer in childhood can mean lifelong health issues
Child; Humans; Adult; Follow-Up Studies; Health Status; adolescent; PedPal Lit; Pain/etiology; Graft vs Host Disease; Survivors; Cataract/etiology; Hearing Loss/etiology; Hematopoietic Stem Cell Transplantation/adverse effects; Vision Disorders/etiology
2006
Senior K
Lancet Oncology
2006
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Journal Article
Corneal surface irregularities and episodic pain in a patient with mucolipidosis IV
Child; Humans; Male; Preschool; Cataract Extraction; Conjunctiva/pathology; Cornea/pathology; Epithelium/pathology; Mucolipidoses/pathology; Pain/etiology; Q3 Literature Search; Tears/secretion
Mucolipidosis IV is a lysosomal storage disease characterized by prominent involvement of the corneal epithelium. A 5-year-old boy with mucolipidosis IV experienced recurrent episodes of severe ocular pain, tearing, and ipsilateral facial flushing. This was suggestive of reflex sympathetic dystrophy, a syndrome of pain and sympathetic hyperactivity. The examination revealed marked corneal surface irregularities, corresponding to massive accumulations of intracytoplasmic storage material in the epithelium. Episodic pain in patients with mucolipidosis IV is an important symptom, presumably reflecting the distinctive corneal ultrastructural abnormality in this disease.
1990
Newman NJ; Starck T; Kenyon KR; Lessell S; Fish I; Kolodny EH
Archives Of Ophthalmology
1990
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Journal Article
<a href="http://doi.org/10.1001/archopht.1990.01070040103041" target="_blank" rel="noreferrer">10.1001/archopht.1990.01070040103041</a>
A Phase I, open label, dose ranging trial of intravenous bolus zoledronic acid, a novel bisphosphonate, in cancer patients with metastatic bone disease
Female; Humans; Male; Adult; Aged; Middle Aged; Treatment Outcome; Non-U.S. Gov't; Research Support; Pain/etiology; Injections; Intravenous; Neoplasms/complications; Anorexia/chemically induced; Biological Markers/analysis; Bone Neoplasms/drug therapy/secondary; Bone Resorption; Constipation/chemically induced; Diphosphonates/administration & dosage/adverse effects/pharmacology; Fever/chemically induced; Imidazoles/administration & dosage/adverse effects/pharmacology; Nausea/chemically induced
BACKGROUND: Bone metastases typically are associated with osteolytic bone destruction, resulting in bone pain, pathologic fractures, spinal cord compression, and hypercalcemia. Bisphosphonates are potent inhibitors of normal and pathologic bone resorption and represent a significant therapeutic improvement in the management of patients with lytic bone metastases. Zoledronic acid is a new-generation, highly potent, nitrogen-containing bisphosphonate that to the authors knowledge is the most potent inhibitor of bone resorption currently in clinical trials. The objectives of the current study were to assess the safety and tolerability of increasing doses of zoledronic acid and to determine its activity with respect to reducing biochemical markers of bone resorption in cancer patients with bone metastases. METHODS: Forty-four cancer patients with bone metastases or primary bone lesions were enrolled sequentially into 1 of 5 fixed ascending-dose treatment groups. Each patient received a single intravenous bolus injection of 1, 2, 4, 8, or 16 mg of zoledronic acid over 30-60 seconds. Patients were monitored for 8 weeks for the evaluation of clinical findings, adverse events, vital signs, electrocardiograms, markers of bone resorption, and urinary N-acetyl-beta-D-glucosaminidase. RESULTS: Zoledronic acid was safe and well tolerated at all dose levels tested. Commonly reported adverse events included bone pain, fever, anorexia, constipation, and nausea, which were experienced by a similar proportion of patients in each treatment group. Seven patients reported serious adverse events, none of which appeared to be related to the study drug. Zoledronic acid effectively suppressed biochemical markers of bone resorption, including the highly specific markers N-telopeptide and deoxypyridinoline, for up to 8 weeks in the 2-16-mg dose groups and for a shorter duration in the 1-mg group. CONCLUSIONS: In the current study, zoledronic acid was safe and well tolerated and demonstrated potent inhibition of bone resorption. The authors believe it may improve the treatment of metastatic bone disease.
Berenson JR; Vescio R; Henick K; Nishikubo C; Rettig M; Swift RA; Conde F; Von Teichert JM
Cancer
2001
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Journal Article
<a href="http://doi.org/10.1002/1097-0142(20010101)91:1%3C144::AID-CNCR19%3E3.0.CO" target="_blank" rel="noreferrer">10.1002/1097-0142(20010101)91:1%3C144::AID-CNCR19%3E3.0.CO</a>
Infantile systemic hyalinosis: newly recognized disorder of collagen?
Female; Humans; infant; Prognosis; Movement; Pain/etiology; Newborn; Hyalin/metabolism; Collagen Diseases/metabolism/pathology/physiopathology; Gingiva/pathology; Hypertrophy; Jejunum/pathology; Joints/physiopathology; Skin/pathology/ultrastructure
Four infants with stiff skin and painful joint contractures in the first few months of life are described. Other features included small papules, particularly on the face and trunk, perianal nodules, hyperpigmentation over the metacarpophalangeal joints and over the malleoli, gingival hyperplasia, persistent diarrhea, and failure to thrive. Two of these infants died before the age of 18 months. In each case hyaline material was found in the papillary dermis. Ultrastructurally, there was a distinctive fibrillogranular appearance in which a banding pattern could be observed. This material was also found within membrane-bound vacuoles in macrophages and fibroblasts. It had an appearance and localization identical with that of collagen type VI. These features are similar to those reported in juvenile hyaline fibromatosis. It is believed that these infants have a closely related, but nonetheless distinctive, inherited disorder of collagen.
1991
Glover MT; Lake BD; Atherton DJ
Pediatrics
1991
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Journal Article
<a href="http://doi.org/10.1111/j.1365-2133.1990.tb04440.x" target="_blank" rel="noreferrer">10.1111/j.1365-2133.1990.tb04440.x</a>
ABC of palliative care. Special problems of children
Child; Humans; Palliative Care; Pain Measurement; Great Britain; Child Health Services; Family Health; Preschool; bereavement; Pain/etiology; social support; Child welfare
1998
Goldman A
Bmj (clinical Research Ed.)
1998
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).
Journal Article
<a href="http://doi.org/10.1136/bmj.316.7124.49" target="_blank" rel="noreferrer">10.1136/bmj.316.7124.49</a>
The Measurement of Symptoms in Children with Cancer
Child; Female; Humans; Male; symptoms; Pediatrics; Longitudinal Studies; Sleep Stages; Children; adolescent; Pain/etiology; Oncology at EOL; cancer; Cough/etiology; Fatigue/etiology; Eating Disorders/etiology; malignancy; Nausea/etiology; Neoplasms/complications/physiopathology/psychology; symptom distress
The purpose of this study was to determine symptom prevalence, characteristics, and distress in children with cancer. The Memorial Symptom Assessment Scale (MSAS) 10–18, a 30-item patient-rated instrument adapted from a previously validated adult version, provided multidimensional information about the symptoms experienced by children with cancer. This instrument was administered to 160 children with cancer aged 10–18 (45 inpatients, 115 outpatients). To confirm the instrument's reliability and validity, additional data about symptoms were collected from both the parents and the medical charts, and retesting was performed on a subgroup of inpatients. Patients could easily complete the scale in a mean of 11 minutes. The analyses supported the reliability and validity of the MSAS 10–18 subscale scores as measures of physical, psychological, and global symptom distress, respectively. Symptom prevalence ranged from 49.7% for lack of energy to 6.3% for problems with urination. The mean (± SD) number of symptoms per inpatient was 12.7 ± 4.9 (range, 4–26), significantly more than the mean 6.5 ± 5.7 (range, 0–28) symptoms per outpatient. Patients who had recently received chemotherapy had significantly more symptoms than patients who had not received chemotherapy for more than 4 months (11.6 ± 6.0 vs. 5.2 ± 5.1), and those patients with solid tumors had significantly more symptoms than patients with either leukemia, lymphoma, or central nervous system malignancies (9.9 ± 7.0 vs. 6.8 ± 5.5 vs. 6.8 ± 5.0 vs. 8.0 ± 6.1). The most common symptoms (prevalence > 35%) were lack of energy, pain, drowsiness, nausea, cough, lack of appetite, and psychological symptoms (feeling sad, feeling nervous, worrying, feeling irritable). Of the symptoms with prevalence rates > 35%, those that caused high distress in more than one-third of patients were feeling sad, pain, nausea, lack of appetite, and feeling irritable. Subscale scores demonstrated large variability in symptom distress and could identify subgroups with high distress. The prevalence, characteristics, and distress associated with physical and psychological symptoms could be quantified in older children with cancer. The data confirm a high prevalence of symptoms overall and the existence of subgroups with high distress associated with one or multiple symptoms. Symptom distress is relatively higher among inpatients, children with solid tumors, and children who are undergoing antineoplastic treatment. Systematic symptom assessment may be useful in future epidemiological studies of symptoms and in clinical chemotherapeutic trials. Symptom epidemiology may also provide a focus for future clinical trials related to symptom management in children with cancer.
2000-05
Collins J J; Byrnes ME; Dunkel IJ; Lapin J; Nadel Traci; Thaler H; Polyak Tanya; Rapkin B; Portenoy RK
Journal Of Pain And Symptom Management
2000
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).
Journal Article
<a href="http://doi.org/10.1016/S0885-3924(00)00127-5" target="_blank" rel="noreferrer">10.1016/S0885-3924(00)00127-5</a>
Palliative Care in Obstetrics and Gynecology
Pain Management; Perinatal Care; Advance Care Planning; Communication; Female; Genital Neoplasms Female/complications/psychology/ Therapy; Humans; Infant Newborn; Life Expectancy; Mood Disorders/etiology/therapy; Nausea/therapy; Pain/etiology; Palliative
Palliative care is specialized care for people with life-limiting illness; it focuses on symptom management and quality of life and ensures that a patient's care is concordant with her goals and values. Unlike end-of-life care, palliative care can be offered concurrently with disease-directed therapies, including when the goal is cure. Obstetrics and gynecology patients for whom palliative care is most appropriate include women with gynecologic cancer and women with a fetus or neonate with a potentially life-limiting illness. Integration of palliative care for these patients offers both clinical and health care utilization benefits, including improved symptom management, improved quality of life, and high-value care. Palliative care can be provided by palliative care specialists (specialty palliative care) or by the team treating the life-limiting illness (primary palliative care), depending on the complexity of the need. Health care providers caring for patients with life-limiting illness, including obstetrician–gynecologists, must possess a basic primary palliative care skill set, including symptom management for common symptoms such as pain and nausea and communication skills such as breaking bad news. This skill set must be taught and evaluated during training and used consistently in practice to ensure that our patients receive truly comprehensive care.
Lefkowits C; Solomon C
Journal Of Obstetrics And Gynecology
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="https://doi.org/10.1097/AOG.0000000000001739" target="_blank" rel="noreferrer">10.1097/AOG.0000000000001739</a>