栄養
Navigating GI Management in LDS 5:22-8:23 So when should we think about supplementation? Again, if someone is dropping percentiles, that last graph I showed you, if someone is less than the 10th percentile for their body mass index or thei…
Navigating GI Management in LDS 1:53-5:18 In terms of nutrition, growth is frequently impaired in people with LDS. There's an increased baseline caloric expenditure if the person has significant food allergies, but those food allergies may…
LDS Guidelines: Then vs. Now 46:57-50:15 Same thing for gastroenterology and nutrition for Loeys-Dietz syndrome. We do follow the growth of our patients, especially our young kiddos very closely, especially if someone is looking at a surge…
Loeys-Dietz Gastroenterology and Allergy Q&A 32:43-34:24 Q:When, when it gets to the point that a child would need a feeding tube like ages two or three because of the they're not able to gain weight should they expect to have that tube fo…
Loeys-Dietz Gastroenterology and Allergy Q&A 7:05-9:06 Also in connective tissue disorders and in some people with Loeys-Dietz syndrome they can have weight gain, can be problematic, so this is also seen in Marfan syndrome as well. It can …
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 51:47-54:19 Q:What are the main nutritional concerns with a consistently low BMI for LDS children? My 15-year-old has struggled with weight gain and his type Loeys-Dietz …
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 38:55-40:30 So to summarize your body mass index or if you're less than two your weight for length should be plotted at every visit and if it is low dropping or a surgery…
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 27:08-28:18 Just to focus on a few more aspects of the nutritional considerations. We know that the bones of people with Loeys-Dietz syndrome are weaker. We want to be su…
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 24:26-27:06 So sometimes however people just aren't able to eat and or drink enough, sometimes dietary exclusions due to allergies make that difficulty. People with Loeys…
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 22:00-23:15 Sometimes calorie packing is not the best way to proceed with some patients and so in those cases we may use formulas. Formulas exist in many different forms.…
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 20:19-21:58 So if your body mass index is dropping percentiles if you're crossing lower in the graph, if you're consistently below the third percentile, if you're below t…
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 18:35-28:20 First talking about some nutritional considerations, so growth with, growth is frequently impaired in people with Loeys-Dietz syndrome. まず、栄養に関する側面…
Personal Perspectives Panel: Life After Aortic Surgery 53:33-55:50 A lot of people also asked about, about diet and nutrition, so I'm curious who on here might be have had to change their diet maybe because of warfarin and oh, what they th…
Covid and Aortic Conditions: The Latest Research 16:19-18:59 You know, several of our other genetic aortic conditions do have other issues that may put them at a higher risk. So Enid, do you want to go over that? I think some of these are …
2016年4月25日Hien Nguyen-Le 先日このマルファンブログで、Alix McLean Jenningsさんが栄養士の先生と協力して、9歳になるマルファン症候群の娘Cassieちゃんの体重を健康的なレベルまで増加させたお話をご紹介しました。前回のブログでは、Aixさんと栄養士…
2016年4月7日Hien Nguyen-Le 先日このマルファンブログで、Alix McLean Jenningsさんが栄養士の先生と協力して、9歳になるマルファン症候群の娘Cassieちゃんの体重を健康的なレベルまで増加させたお話をご紹介しました。今回のブログでは、Aixさんと栄養士の…
2016年5月22日Alix McLean Jennings 私達マルファン症候群の家族にも関わりの深いQOL（生活の質）の問題に対するThe Marfan Foundationの取り組みには、とてもワクワクしています。9歳になるマルファンの娘の母親として、現在そして将来の娘のQOLについて日…
