Q & A
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 58:43-1:01:09 Q:Could you speak to the effects of connect, connective tissue disorders on the pelvic floor? This person specifically asked about Marfan but maybe broadly …
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 55:58-58:39 Q:Do you have any concern about long-term use of senna? Do you think magne, Mag O7 could be an effective alternative dosing? 大腸刺激性下剤の長期間服用には問…
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 54:23-55:49 Q:Are there any new treatments for, I'm just gonna go ahead and use the abbreviation EoE so I don't butcher the, the words here, except diet, steroids, and PP…
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 49:50-51:33 Q:Next question my son with Loeys-Dietz gets sick or vomits at least a couple times a week. Should he be seeing a gastroenterologist or is this common? LDSの…
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 48:13-49:35 Q:What are the main things to look out for and should test to look for this be carried out on everyone with Loeys-Dietz or just those with symptoms? We have a…
Pediatric Gastrointestinal Issues in LDS (August 27, 2020) E3 Summit 46:18-48:01 Q:Next question is taking Miralax daily twice a day okay and does it cause malnutrition and/or low potassium? ミララックスを毎日2回服用しても問題ないでしょう…
42:31-46:07 Q:It says is there a specific allergy common in Loeys-Dietz syndrome? My partner is dairy and lactose intolerant so should we consider an allergy test for our old 14-year old, 14 month- old son, LDS SMAD3? LDSで多くみられるアレ…
Living a Life with LDS (September 12, 2020) E3 Summit 1:18:18-1:23:47 Q:Just I guess thoughts on ways to manage chronic pain in LDS at different ages and I think particularly as people age and, and start getting into arthritis and things l…
Living a Life with LDS (September 12, 2020) E3 Summit 1:12:50-1:17:01 Q:A couple questions around puberty. One is about, "Are there is, there anything to suspect that a late onset of puberty would be caused or be an effect of LDS?" and the…
Living a Life with LDS (September 12, 2020) E3 Summit 1:09:00-1:12:37 Q:Questions a few of them here about life expectancy. One asking, "Has the life expectancy statistic changed in the last decade and also about lifespan expectancies for …
Living a Life with LDS (September 12, 2020) E3 Summit 1:03:48-1:08:54 Q:Question about losartan. If you can't tolerate a high dose and it might and this person says, "In my case due to low blood pressure will losartan still make a differen…
Living a Life with LDS (September 12, 2020) E3 Summit 59:44-1:03:45 Q:Switching gears here a little bit. How common is dysautonomia in LDS, specifically temperature regulation and heat intolerance? テーマが変わりますが、自律神経障害はLDSで…
Living a Life with LDS (September 12, 2020) E3 Summit 54:42-59:37 Q:So another side of that same coin perhaps is asked how to and maybe we could word this multiple different ways. How do we teach doctors that don't want to learn? Million d…
Living a Life with LDS (September 12, 2020) E3 Summit 50:19-54:38 Q:The next question and I think this is this could probably be taken a little more broadly even. My 22-year-old son was diagnosed with LDS4 one year ago. The only thing he's…
Living a Life with LDS (September 12, 2020) E3 Summit 44:43-49:02 Okay, I think that covers most of the imaging questions that I've seen here. I'm gonna move now. 先ほどのLoeys先生の説明で画像検査についての質問はほぼ網羅されたと思いますの…
Living a Life with LDS (September 12, 2020) E3 Summit 42:06-44:41 Q:About children and how often, how often they should be getting an MRI image being done? Two kids with SMAD3. Is every two years acceptable as I have read how quickly thing…
Living a Life with LDS (September 12, 2020) E3 Summit 37:44-41:52 Q:There are several questions, as is not surprising, about different types of imaging, a lot of imaging questions so I'm just gonna see if I can lump these together and we c…
Living a Life with LDS (September 12, 2020) E3 Summit 34:00-37:40 Q:Could you talk about craniocervical instability in LDS? Any new HCTD types that have been discovered? What is the usual cause of cerebral, cerebellar tonsillar ectopia or …
Living a Life with LDS (September 12, 2020) E3 Summit 31:29-33:50 Q:Next question, we'll toss to you Dr. Loeys. How often should you get a next, neck flexion x-ray to check for instability? 次の質問はLoeys先生にお願いします。頚椎不安定症を…
Living a Life with LDS (September 12, 2020) E3 Summit 28:31-31:24 Q:Next question wondering if there's any research on having LDS or as well Marfan syndrome and having menopause. I'm curious how losing estrogen affects women's bodies when …
Living a Life with LDS (September 12, 2020) E3 Summit 25:18-28:26 Q:So the first question and I'll let you two decide who, who wants to start here. Perhaps Dr. Dietz, it's your time to your turn to chime in first. では最初の質問です。Loeys…
Surgery Series: Aortic Arch (2/22/21) 1:12:49-1:13:42 Q:When you, when you're, when you, when you replace the aorta, this is a good great question, I never saw this one before, when you replace the aorta with the dacron how, what's the dia…
Surgery Series: Aortic Arch (2/22/21) 1:10:22-1:12:49 Q:Can you talk a little bit more about the aortic size, which you mentioned before and you said it's different, different number based on the person's bigger or smaller, so it's so, if …
Surgery Series: Aortic Arch (2/22/21) 1:09:23-1:19:20 Q:So what likelihood is there for scar tissue to develop after a full arch replacement and how would scar tissue impact the patient? 弓部全置換後に瘢痕組織が生じる可能性はどのくらいでし…
Surgery Series: Aortic Arch (2/22/21) 1:07:35-1:09:19 Q:Is this, so this surgery, the aortic arch surgery is just always done in an open open way? Is there any way to avoid open surgery? 大動脈弓部の手術には開胸手術以外の方法がありますか？…
Surgery Series: Aortic Arch (2/22/21) 1:06:30-1:07:31 Q:So if we can talk about Loeys-Dietz for a second. You mentioned that patients having elective root replacement surgery, you generally recommend a total re-implantation of the arch at …
Surgery Series: Aortic Arch (2/22/21) 1:05:13-1:06:20 Q:Just about the vocal cords we can go back to that for a second. Does that, does that, does it go back? （反回神経の損傷による）声帯麻痺は治るのでしょうか？ A:So some patients, it's a …
Surgery Series: Aortic Arch (2/22/21) 1:02:58-1:05:08 Q:We're gonna go to Jill, who asked her a question before we started the presentation tonight. She says her native arch is still intact but she has dacron, dacron everywhere else. Is th…
Surgery Series: Aortic Arch (2/22/21) 1:00:24-1:01:28 Q:And so and just going back to that brain perfusion right near the end of your talk. You said that mortality was lower if that was done but you didn't give any numbers. People are aski…
