Parenting experiences among fathers of prematurely-born children with cerebral palsy in South Korea

Purpose: The symptoms and impairments caused by cerebral palsy usually require long-term treatment, resulting in a substantial burden on the family of affected children. This study explored the experiences of fathers with prematurely-born children with cerebral palsy, with a focus on how such experiences influenced their families.Methods: A qualitative case study method was used. Nine subjects were recruited from April 2018 to June 2019 at one hospital, and each was interviewed three times by a neonatal nurse.Results: Five core experiences of fathers were identified: "regret for an insufficient initial response", "confronting my child born as a premature baby", "the position of being a dad who can't do anything", "the process of treatment like a tunnel with no exit", and "a father's getting meaning in life through children". These stories covered an individual's timeline and family interactions. Conclusion: Our findings suggest that fathers of prematurely-born children tend to suppress their emotions; therefore, a novel intervention program to encourage fathers' emotional expression and to support healthier interactions with their families is needed. Moreover, our findings could contribute basic information for the construction of a community-based support system to aid families, including prematurely-born children and other persons with impairments.

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Long-term treatment of spasticity in children with cerebral palsy

International Disability Studies ◽

10.3109/03790798709166357 ◽

1987 ◽

Vol 9 (4) ◽

pp. 170-172 ◽

Cited By ~ 3

Author(s):

Gabriella E. Molnar

Keyword(s):

Cerebral Palsy ◽

Term Treatment ◽

Long Term Treatment ◽

Children With Cerebral Palsy

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VAIKŲ, SERGANČIŲ CEREBRINIU PARALYŽIUMI, ILGALAIKIO GYDYMO BOTULINO TOKSINU POVEIKIS ČIURNOS SĄNARIO JUDESIO AMPLITUDEI IR VAIKŲ MOBILUMUI

Sveikatos mokslai ◽

10.5200/sm-hs.2015.010 ◽

2015 ◽

Vol 25 (1) ◽

pp. 58-65

Author(s):

Laima Mikulėnaitė ◽

Jovita Petrulytė ◽

Anastasija Žernakova

Keyword(s):

Cerebral Palsy ◽

Botulinum Toxin ◽

Ankle Joint ◽

Movement Disorders ◽

Treatment Time ◽

Term Treatment ◽

Clinical Syndrome ◽

Functional Movement ◽

Long Term Treatment

Introduction. Spasticity – the basic and the most common clinical syndrome of cerebral palsy. Most of the time child’s functional and movement disorders depend on this. Botulinum toxin is a drug that relaxes muscles by blocking the release of acetylcholine (ACH) in neuro muscular connection and reduces level of spasticity. The short-term effect of BTX has been proven in scientific literature and it is well known. The effect of treatment with BTX –A in a long-term remains insufficiently studied. Purpose. To evaluate the effect on changes in child’s with cerebral palsy conditions of ankle and child’s mobility over the long time (over 1 year) in the treatment with BTX-A. Method. 98 children with cerebral palsy were treated. The main indication for the treatment of BTX- A was a dynamic ankle joint contracture, resulting in functional status or movement disorders. Condition of all children were evaluated 1 month before starting the treatment with BTX; prior to each injection; within 1 – 2 months after the beginning of treatment with Dysport and after 4 months while planning further treatment with botulinum toxin. The passive ROM of child’s ankle joint was assessed with goniometer measuring the ankle of dorsiflexion while stretching the child’s knee. The functional movement of the child was assessed using the GMFM -88 scale. Results. The average age of children after first BTX-A injection was 33.29 ± 16.235 months. The majority of children (n = 45) were mobile belonging to I - II level at the GMFCS and partly mobile belonging to level III (n = 35). The number of injections of BTX –A ranged from 2 to 8 times per child. The data suggest that despite long-term treatment with BTX –A and physical therapy with the increase of child’s age the contracture of the ankle joint forms. In all cases the only criteria which are statistically significant is time. It means that passive changes in ankle joint dorsiflexion depend on its treatment time. Assessment of child’s functional movement with GMFM -88 scale showed that with each injection of BTX –A the functional movement of a child is enhanced. The highest improvement in motion has been established after the sixth injection of botulinum toxin. Conclusion. Treatment with BTX-A doesn’t have an impact on increase of passive amplitude of ankle and it doesn‘t affect the formation of contractures. Functional movements of a child improvement depend on treatment time: the best result was reached after sixth injection of BTX.

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The Long-term Treatment of Multifocal Motor Neuropathy with Intravenous Immunoglobulin

European Neurological Review ◽

10.17925/enr.2012.07.02.128 ◽

2012 ◽

Vol 7 (2) ◽

pp. 128 ◽

Cited By ~ 1

Author(s):

Leonard H van den Berg ◽

Keyword(s):

Muscle Strength ◽

Intravenous Immunoglobulin ◽

Initial Response ◽

Multifocal Motor Neuropathy ◽

Term Treatment ◽

Response To Treatment ◽

Motor Neuropathy ◽

Double Blind ◽

Long Term Treatment

Multifocal motor neuropathy (MMN) is a rare, purely motor neuropathy. It is a progressive disorder, most patients eventually developing severe fatigue and weakness in the arm muscles that severely impair daily functioning and quality of life. Unlike other motor neuropathies such as motor neurone disease, MMN is treatable with regular infusions of intravenous immunoglobulin (IVIg). Four double-blind, randomised, placebo-controlled studies have shown that in the short term, IVIg significantly improves muscle strength and disability in more than 70 % of patients. The 11 observational studies reviewed in this article confirm that long-term maintenance treatment with IVIg maintains clinical improvement compared to pre-treatment baseline in most patients. Infusions are generally well tolerated, but regular monitoring and re-evaluation of the IVIg maintenance regimen is essential, as most patients need progressive increases in dosage or reduced intervals between infusions to maintain their response to treatment. In the absence of accepted predictive markers, maintenance IVIg should be individualised, based on each patient’s initial response, disability and the interval between the first infusion and decline in muscle strength.

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Reduced susceptibility to fluconazole in a cat with histoplasmosis

Journal of Feline Medicine and Surgery Open Reports ◽

10.1177/2055116917743364 ◽

2017 ◽

Vol 3 (2) ◽

pp. 205511691774336

Author(s):

Janelle S Renschler ◽

Gary D Norsworthy ◽

Rubie A Rakian ◽

Audrey I Rakian ◽

Lawrence J Wheat ◽

...

Keyword(s):

Lymph Node ◽

Histoplasma Capsulatum ◽

Antifungal Susceptibility ◽

Initial Response ◽

Term Treatment ◽

Dimorphic Fungi ◽

Abdominal Lymph Node ◽

Long Term Treatment ◽

Fluconazole Therapy

Case summary An 11-year-old neutered male domestic longhair cat was diagnosed with histoplasmosis from fine-needle aspirates of an abdominal lymph node. Lymph node size initially decreased with fluconazole therapy (11.8 mg/kg PO q12h); however, after 13 months of continuous fluconazole therapy, lymphadenomegaly worsened and samples were collected for culture and antifungal susceptibility. The Histoplasma capsulatum isolate had a very high fluconazole minimum inhibitory concentration (MIC) of 64 µg/ml and an itraconazole MIC of 0.06 µg/ml. The owner declined a change to itraconazole and, ultimately, the cat developed neurologic signs and was euthanized. Owing to the initial response to fluconazole followed by treatment failure and high MIC value, acquired fluconazole resistance was suspected. Clinical breakpoints for fluconazole for the dimorphic fungi are not available to define true antifungal resistance. Relevance and novel information This is the first published report of reduced susceptibility to fluconazole in a cat being treated for histoplasmosis. Fluconazole failure and increases in MIC between pretreatment and long-term treatment isolates are known to occur in humans with histoplasmosis. Practitioners should be aware of this possibility when treating cats with fluconazole (particularly in cases with long-term [>1 year] fluconazole therapy or in cases with disease recrudescence).

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CONDUCTING COMPARATIVE CLINICAL-PHARMACOLOGICAL EVALUATION PHARMACOTHERAPY PREPARATIONS OF BOTULINUM TOXIN A IN CHILDREN WITH CEREBRAL PALSY SYNDROME WITH MARKED SPASTICITY

Medical Journal of the Russian Federation ◽

10.18821/0869-2106-2019-25-5-6-293-302 ◽

2019 ◽

Vol 25 (5-6) ◽

pp. 293-302

Author(s):

Anna Petrovna Solovieva ◽

Vladimir Vladimirovich Arkhipov ◽

Dmitry Vladimirovich Goryachev

Keyword(s):

Cerebral Palsy ◽

Botulinum Toxin ◽

Botulinum Toxin A ◽

Pharmacoeconomic Analysis ◽

Botulinum Toxin Type A ◽

Botulinum Toxin Type ◽

Term Treatment ◽

Long Term Treatment ◽

Clinical Pharmacological Evaluation

The original methodology for retrospective clinical studies on the criteria of “efficiency/safety” and pharmacoeconomics on the criteria of “cost/effectiveness”is proposed. The results of a retrospective study of medical records in 169 patients with cerebral palsy, which showed that the use of drugs botulinum toxin type A is an important integral component in the long-term treatment of children with spastic forms of cerebral palsy. Presents the results of pharmacoeconomic analysis of the treatment of the syndrome of spasticity in cerebral palsy when used in the complex treatment of Dysport, Botox and Xeomin.

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Nasal trumpet as a long-term remedy for obstructive sleep apnea syndrome in a child

SAGE Open Medical Case Reports ◽

10.1177/2050313x211055303 ◽

2021 ◽

Vol 9 ◽

pp. 2050313X2110553

Author(s):

Tammy Yau ◽

Ruchi Bansal ◽

Kimberly Hardin ◽

Craig Senders ◽

Kiran Nandalike

Keyword(s):

Obstructive Sleep Apnea ◽

Cerebral Palsy ◽

Sleep Apnea ◽

Obstructive Sleep Apnea Syndrome ◽

Sleep Apnea Syndrome ◽

Obstructive Sleep ◽

Long Term Treatment ◽

Children With Cerebral Palsy ◽

Apnea Syndrome

We present a case of successful long-term use of nasal trumpet for severe obstructive sleep apnea syndrome in a child with cerebral palsy and complex medical issues. Obstructive sleep apnea syndrome is frequently seen in pediatric patients with cerebral palsy due to their abnormal airway tone and pulmonary vulnerability. Identifying children with cerebral palsy who are at risk for obstructive sleep apnea syndrome is important because its treatment can improve quality of life and seizure control. Although first-line treatment for obstructive sleep apnea syndrome is adenotonsillectomy, children with cerebral palsy are more likely to have residual obstructive sleep apnea syndrome postoperatively. Other options such as positive airway pressure therapy and other upper airway surgeries may pose significant challenges and tolerance issues, as in our patient. As demonstrated in our report, the low rate of complications and ease of use make nasal trumpets a potential long-term treatment option for children with obstructive sleep apnea syndrome who fail or cannot comply with the traditional treatment options.

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Successful management of Kaposiform Hemangioendothelioma with long-term sirolimus treatment: a case report and review of the literature

Mediterranean Journal of Hematology and Infectious Diseases ◽

10.4084/mjhid.2018.043 ◽

2018 ◽

Vol 10 (1) ◽

pp. e2018043 ◽

Cited By ~ 4

Author(s):

Matteo Chinello ◽

Daniela Di Carlo ◽

Francesca Olivieri ◽

Rita Balter ◽

Massimiliano De Bortoli ◽

...

Keyword(s):

Initial Response ◽

Term Treatment ◽

Term Therapy ◽

Published Data ◽

Retrospective Case ◽

Kaposiform Hemangioendothelioma ◽

Long Term Treatment ◽

Life Threatening ◽

Long Term Therapy

Background: Kaposiform Hemangioendothelioma (KHE) is a rare vascular tumour of the infancy and of the first decade of life. It is locally aggressive and potentially life threatening when associated to consumptive coagulopathy, known as Kasabach-Merritt syndrome (KMS). No consensus or guideline for the therapy has been reached because of the lack of prospective trials and the different standard care suggestions are based on retrospective case series.Case report: We report the case of a 9-month-old male with KHE and KMS in which the initial response, obtained with prednisone and vincristine, was subsequently consolidated and strengthened by long-term treatment with sirolimus, an mTOR inhibitor. A summary of the published data is presented as well.Conclusions: The inhibition of mTOR pathway represents the most important therapeutic innovation introduced in the last few years for KHE. Our case shows the effectiveness and good tolerance of long-term therapy with sirolimus.Keywords: Kaposiform Hemangioendothelioma, Kasabach-Merrit syndrome, sirolimus, prednisone, vincristine

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