Looking for Help/Clarification on CF

Hi, I am new here and hope this is the right place to be. My daughter is 17 months old and has a long, complicated medical history including severe reflux, aspiration, lyrangomalasia, Failure to Thrive, severe central and obstructive apnea, low muscle tone, many sinus infections, and wears orthotics to help her walk. She has been hospitalized 7 times and had surgery where they did a nissen fundoplication and G-tube at 3 months old. She also has problems with digestion (large amounts of undigested foods in stool) and has a hard time gaining weight even with the G-tube. She also has re-current infections and has never responded to antibiotics. Full immunology work-up found nothing. We have been looking for answers she was born and recently moved to Colorado Springs. Within a few weeks of seeing specialists here, they decided to do a sweat test to look for Cystic Fibrosis (it was done at a CF foundation accredited place with Colorado Children's Hospital). Her sweat test was intermediate borderline with the right arm being 46 and the left arm being 50. They tested for the more common forms of CF and they all came back normal and now are testing for the more rare forms. We should find out test results June 1st. In Georgia where we live before her pancreatic elactase was 196 indicating pancreatic insufficiency. They re-did the pancreatic elactase test here and it is now 372 - a HUGE discrepancy. The doctors are telling me they have never seen it go up only down and they are not s...
Source: Cystic Fibrosis Newly Diagnosed Forum - Category: Respiratory Medicine Authors: Tags: Newly Diagnosed Source Type: forums

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Conclusion: An electronic alert incorporated into the ED workflow to populate a discharge order set is effective to initiate asthma controller medication for poorly controlled pediatric patients. Additional data describing reasons for not prescribing ICS can further refine recommendations for ICS prescriptions, and provide a comprehensive strategy to support clinical decision for pediatric asthma control in acute care settings. PMID: 31226000 [PubMed - as supplied by publisher]
Source: Journal of Asthma - Category: Respiratory Medicine Tags: J Asthma Source Type: research
FDA expanded the indication for Symdeko for treatment of pediatric patients ages 6 years and older with cystic fibrosis who have certain genetic mutations.
Source: FDA Center for Drug Evaluation and Research - What's New - Category: Drugs & Pharmacology Authors: Source Type: news
Discussion –-       Bronchial atresia usually is benign and asymptomatic and is incidental finding&clinical manifestations may range from recurrent pulmonary infections to mild wheezing and dyspnea. Bronchial atresia is a congenital abnormality resulting from focal interruption of a lobar, segmental, or subsegmental bronchus with associated peripheral mucus impaction (bronchocele, mucocele) and associated hyperinflation of the obstructed lung segment. The apicoposterior segmental bronchus of the left upper lobe is most common site to be involved, followed by segmental bronc...
Source: Sumer's Radiology Site - Category: Radiology Authors: Source Type: blogs
The FDA has approved tezacaftor/ivacaftor tablets for use in children as young as 6 years with cystic fibrosis with certain genetic mutations in the CFTR gene.FDA Approvals
Source: Medscape Medical News Headlines - Category: Consumer Health News Tags: Pulmonary Medicine News Alert Source Type: news
FRIDAY, June 21, 2019 -- The indication for a cystic fibrosis treatment, Symdeko (tezacaftor/ivacaftor) tablets, has been expanded to treat children ages 6 years and older with cystic fibrosis and certain genetic mutations, the U.S. Food and Drug...
Source: Drugs.com - Pharma News - Category: Pharmaceuticals Source Type: news
Publication date: 5 November 2019Source: Journal of Molecular Structure, Volume 1195Author(s): Tooba Siddiqui, Mohammad Khalid Zia, Syed Saqib Ali, Haseeb Ahsan, Fahim Halim KhanAbstractHydrogen peroxide (H2O2) is an important signalling molecule and a non-radical reactive oxygen species (ROS) which can convert into more potent oxygen radicals leading to oxidative stress. The correlation between oxidative stress and the cellular proteinase-antiproteinase balance has been a major component in the development of several pathologies such as emphysema and cystic fibrosis. The present studies attempt to explore the functional i...
Source: Journal of Molecular Structure - Category: Molecular Biology Source Type: research
Source: Journal of Cystic Fibrosis - Category: Respiratory Medicine Source Type: research
CF clinicians have long recognized the negative effect of malnutrition on outcomes in people with CF [1] and the importance of a high-calorie diet to support weight gain and growth [2] . Nutritional status has been widely accepted as one of the critical metrics for health in people with CF. Low BMI has been identified as one factor associated with larger mean annual lung function decline [3]. Enteral feedings to increase caloric intake are used to support optimal weight gain in those at nutritional risk.
Source: Journal of Cystic Fibrosis - Category: Respiratory Medicine Authors: Tags: Perspective Commentary Source Type: research
In recent years there has been a significant increase in the number of randomised controlled trials (RCTs) in CF. All eyes are focused on the therapeutic effect under investigation and what that could mean for people with CF. RCTs frequently contain a placebo (control) arm to function as a methodological safeguard for systematic bias, normal fluctuations in outcome measures, regression of outcome measures to the mean, and most importantly, the effect size of the therapeutic intervention [1]. It is recognised that participants in the placebo arm of RCTs can experience improvement in patient-reported outcomes (e.g.
Source: Journal of Cystic Fibrosis - Category: Respiratory Medicine Authors: Tags: Editorial Source Type: research
To conduct a systematic review of the evidence to determine the impact of cystic fibrosis (CF) on unaffected siblings.
Source: The Journal of Pediatrics - Category: Pediatrics Authors: Tags: Original Article Source Type: research
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