Facebook Support Groups for Rare Pediatric Diseases: Quantitative Analysis and Cross-Sectional Study to Investigate Opportunities, Limitations, and Privacy Concerns

Background: With affected individuals being widely geographically dispersed, finding an in-person support group can be a challenge. Families therefore turn to social networking platforms such as Facebook for online support groups. Objective: We aim to provide a comprehensive quantitative analysis of the extent of Facebook usage as a tool for rare pediatric disease support groups and to put into perspective the opportunities Facebook offers by investigating its use, advantages, and limitations including privacy concerns. Methods: Rare pediatric diseases listed on Orphanet were searched on Facebook. Disease- and group-describing parameters were analyzed using standard descriptive statistical methods. Members of 12 Facebook groups were invited to a cross-sectional online survey. Results: 6398 Facebook support groups, representing 826 diseases (19.5% of all searched diseases), were found. Group type, size, activity, new memberships, language, and privacy setting varied largely between groups. Of 231 respondents 91.3% were parents (183 mothers, 27 fathers). 59.7% reported a self-initiated search, 24.2% received recommendations from their health professionals, and 12.6% from someone else affected by the disease. On average, members visited and passively participated several times a week, and participated actively once a month. Group members expressed more concern about privacy issues on Facebook in general than in their respective Facebook support groups. Conclusions: Facebook is widely used for support groups for rare pediatric diseases and enhances support group accessibility. Members perceive a reduction and elimination of distance, and the groups create an environment of perceived privacy which results in sharing personal information and pictures. It is important to discuss and protect children's privacy rights in this context. Health professionals can use these results to inform affected persons about Facebook as a tool for support groups in their counseling

Supplementing growing Holstein steers fed a corn-urea diet with a mixture of essential amino acids increases performance

Six ruminally cannulated Holstein steers (550 lb) implanted with Revalor-S were infused abomasally with water or a mixture of six amino acids in a crossover experiment (two 14-day periods) to evaluate effects on nitrogen balance. The mixture was comprised of amino acids that potentially may be limiting in lightweight steers, namely (g/day): lysine (5.3), methionine (3.3), threonine (3.2), tryptophan (1 .0), histidine (2.1), and arginine (5.5). Steers were fed at levels just below ad libitum intake. The diet contained 86% rolled corn, 10% prairie hay, 3% mineral and vitamin premixes, and 1% urea (as-fed). Amino acid infusion increased nitrogen retention by 17.9% over the control, from 27.9 g N/day to 32.9 g N/day. This indicates that implanted steers fed a high concentrate diet are able to respond to amino acid supplementation, suggesting that at least one of the infused amino acids was limiting in the basal corn-urea diet

Performance of lactating cows fed procressed grain sorghum and expeller soybean meal

Forty-four Holstein cows were used to measure milk production responses to dryrolled vs processed grain sorghum and expeller vs solvent soybean meal (SBM) in a 2×2 factorial arrangement of four treatments. Processing of grain sorghum decreased feed intake 5%, but increased milk by 3%, protein by 4%, and efficiency by 7%, with fat being unaffected. Replacement of solvent SBM with expeller SBM had little effect on intake, but increased milk by 3%, fat by 5%, and efficiency by 4%, with protein being unaffected. The processing of grain sorghum seems to be a valuable method to improve its nutritive value for lactating cows. Total milk and fat yield, but not protein yield, were increased in response to feeding expeller SBM in the place of solvent SBM

Dietary molasses enhances ruminal biohydrogenation and partially alleviates diet- induced milk fat depression

Dairy Research, 2008 is known as Dairy Day, 2008Milk fat depression remains a problem on dairy farms, and in recent years, incorporation of distillers grains (typically with solubles added and often dried) has contributed to this problem on some farms. In this study, we evaluated whether molasses could prevent milk fat depression in cows fed a high-risk diet. Replacing up to 5% of dietary corn with cane molasses linearly increased the yield of short- and medium-chain fatty acids in milk, indicating a positive effect on de novo fatty acid synthesis in a milk fat depression environment. Molasses, however, tended to linearly decrease milk yield and linearly decreased milk protein yield, resulting in no net effect on energy- or solids-corrected milk yield. These results indicate that the potential exists for sources of dietary sugar to prevent milk fat depression, but further research is needed to determine when sugar sources might be most effective

Effect of nitrogen supplementation and Zilpaterol-HCl on urea recycling in steers consuming corn-based diets

Cattle have the innate ability to recycle nitrogen absorbed post-ruminally back to the rumen as endogenously synthesized urea. Urea returning to the rumen provides an additional opportunity for ruminal microbes to benefit from nitrogen absorbed postruminally. Urea recycling may provide a significant benefit to cattle when protein requirements of ruminal microbes are high or when large amounts of the dietary protein escape ruminal degradation

D- VS L-methionine utilization by growing steers

Increasing the amino acid supply to the small intestine of growing cattle can increase performance, if specific amino acids are limiting. Although this can be accomplished by feeding rumen undegradable protein, a more economical approach may be supplementing only those amino acids that actually limit performance, but in a form that will bypass the rumen. Methionine (MET) is thought to be a limiting amino acid for growing cattle. DL-MET, a 50 :50 mixture of natural methionine (L-MET) and the unnatural optical isomer (D-MET) is used widely in monogastric rations. Ruminally protected DL-methionine is also available for cattle; however, little information is available about its utilization by growing steers. We studied the efficiency of utilization of D- vs L-MET by growing steers by measuring nitrogen retention of steers postruminally supplemented with graded levels of D- or LMET. Nitrogen retention increased linearly in response to infusion of both L-MET and D-MET, with similar responses for the two isomers. The efficiency of utilization of DMET relative to L-MET was estimated to be 95.5%. In conclusion, D-MET was similar to L-MET in increasing nitrogen retention of growing steers

Guanidinoacetic Acid as a Precursor of Creatine for Cattle

Creatine serves as an energy-storing molecule in muscle, and in mammals it can be synthesized in the liver from guanidinoacetic acid (GAA). With this study, we evaluated whether GAA supplementation would lead to creatine production in cattle similarly to other species. Because the synthesis of creatine from GAA requires the use of a methyl group, we also evaluated the effect of supplementing methionine, as a methyl group donor, on the synthesis of creatine.Supplemental GAA did increase plasma concentrations of creatine. Also, blood concentrations of arginine, a precursor to GAA, were increased by GAA supplementation, suggesting that arginine use for GAA synthesis was spared by GAA provision. Plasma homocysteine, a marker that is inversely related to methyl group status, was not affected by GAA supplementation when heifers received 12 g/d methionine; however, it was increased by 30 or 40 grams per day of GAA supplementation when methionine was not supplemented. Results suggest that post-ruminal GAA supplementation increases creatine supply to cattle and spares arginine utilization. Moreover, GAA supplementation induced a methyl group deficiency that was resolved with methionine supplementation

Effects of energy level on methionine utilization by growing steers

The objective of this study was to evaluate the effect of energy level on amino acid utilization in growing steers. Six ruminally cannulated Holstein steers (503 lb) were limit-fed (6.2 lb/day dry matter) a diet based on soybean hulls (83%), wheat straw (7.6%), and cane molasses (4.1%). The treatments consisted of the infusion of two methionine levels (0 or 3 g/d) and three energy levels (0, 1.3, or 2.6 Mcal ME/day) in a 2 x 3 factorial arrangement. Energy was supplied through ruminal infusion of acetate, propionate, and butyrate and through abomasal infusion of glucose and fat in increasing amounts. No interactions between methionine and energy level were observed. Nitrogen balance was increased by methionine supplementation, indicating that this amino acid limited protein deposition. A linear increase in nitrogen retention was found with the increase in energy. These improvements in protein deposition were related to reductions in urinary nitrogen excretion, reduced plasma-urea concentrations, and greater circulating concentrations of insulin and insulin-like growth factor-I. The results of this study suggest that amino acid utilization can be improved by increasing energy. These effects could be partly explained by variations in plasma concentration of key hormones involved in the control of protein deposition

Rhombenzephalosynapsis, biparietale Alopezie und Hornhauttrübung

Zusammenfassung: Bei der Untersuchung des mental retardierten und stimmungslabilen 16-Jährigen mit kongenitalem Hydrocephalus internus fielen eine parietale Alopezie, eine Hornhauttrübung, ein Brachyturrizephalus, eine späte Pubertät, ein Kleinwuchs und eine Ataxie auf. In der Magnetresonanztomographie fanden sich eine Rhombenzephalosynapsis sowie weitere zerebrale Auffälligkeiten. Wir diagnostizierten ein Gómez-López-Hernández-Syndrom. Dieses ist gekennzeichnet durch das kombinierte Auftreten einer Rhombenzephalosynapsis und einer parietalen Alopezie, häufig assoziiert mit weiteren typischen Fehlbildunge

The effects of rbST (POSILAC®) on heat stressed, lactating, dairy cows

Two hundred cows located on a commercial dairy in Mesquite, NM were used to evaluate response to rbST (POSILAC®) during heat stress in the summer of 1996. Cows were paired by days in milk (average = 153 d at initiation of experiment), parity, and milk yield (average = 92 lb at start of experiment). Prior to initiation of the experiment, all cows received rbST, then rbST treatment was discontinued for one cow from each pair. Milk production was monitored for 4 months. No interactions were detected between lactation number and treatment. Cows maintained on rbST gained .09 of a score (1 to 5scale) less (P\u3c.05) body condition but produced more (P\u3c.05) milk in June, July, August, and September. The average milk productions for rbST-maintained vs rbST-discontinued cows were 80.7 vs 73.5 lb/d in June, 80.1 vs 74.6 lb/d in July, 72.6 vs 67.1 lb/d in August, and 65.1 vs 59.2 lb/d in September. Although rbST-discontinued cows had greater declines in production discontinued cows had greater declines in production persistency was similar between groups during the final 3 months. Under conditions of heat stress, cows maintained on rbST produced 6.2 lb/d more milk than cows for which treatment with rbST was discontinued.; Dairy Day, 1997, Kansas State University, Manhattan, KS, 1997