Publications by authors named "Kristina Malik"

Article Synopsis
  • Rearrangements on the p-arm of Chromosome 8 can lead to various neurodevelopmental issues, including epilepsy and developmental delays, along with potential heart and brain malformations.
  • Most patients in this study exhibit a specific type of rearrangement characterized as inverted-duplication deletion, but other changes like deletions and duplications also show similar effects.
  • The report provides detailed descriptions of patients based on their chromosomal changes, shares neuro-psychometric data, and offers care guidelines for those working with patients affected by Chromosome 8p Syndromes based on experiences from a specialized program.
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Objective: Children with medical complexity (CMC), a subgroup of children with special health care needs (CSHCN) with the most serious medical conditions and disabilities, are at risk for negative effects from poor oral health. CSHCN have high rates of poor oral health, including cavities. This study aimed to compare oral health status between CMC and CSHCN.

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X is a 22-month-old White male infant with a complex medical history, including diagnoses of FBXO11 mutation, hypotonia, restrictive lung disease and mild intermittent asthma, laryngotracheomalacia, obstructive sleep apnea (OSA), feeding difficulties with a history of aspiration, gastroesophageal reflux disease (GERD), and developmental delays. X's medical presentation has resulted in multiple prior medical admissions for respiratory failure due to acute illnesses, procedures and treatments including gastrojejunostomy (GJ) tube dependence, supraglottoplasty to reshape tissues of the upper larynx, and the use of biphasic positive airway pressure (BiPAP) at night and room air during the day when he is at baseline. In addition, he has nocturnal events characterized by significant agitation, screaming, crying, body stiffening and limb movements with pauses in breathing, mouth breathing, restless sleep, and difficulty waking in the morning with concomitant daytime fatigue despite above treatments for OSA.

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Aim: To identify the highest-priority clinical research areas related to children with neurological impairment and medical complexity among clinicians and caregivers.

Method: A modified, three-stage Delphi study using online surveys and guided by a steering committee was completed. In round 1, clinicians and family caregivers suggested clinical topics and related questions that require research to support this subgroup of children.

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