CCDS Expert Panel Webinar - November 1, 2022

This quarterly webinar series presents CTD, GAMT, and AGAT case studies developed through our PCORI-funded PaReNts Project, with a focus on caregiver concerns. Panel discussions are led by Dr. Sylvia Stockler and world-renowned experts from the field of CCDS.
Timestamps:
00:00 CCDS Expert Panel Webinar
04:50 Meet Today's Panel introduced by Heidi Wallis, ACD Executive Director
05:56 Celeste Graham shared the case presentation
06:24 CTD Case 1 Behavior Presentation
12:11 Question for the Expert Panel: Do you have any other suggestions about what would help with - decreasing behaviors and increasing self-regulation
12:24 CTD Case 1 Answers
12:37 CTD Case 2 Behavior Presentation
16:06 Question for the Expert Panel: Do you have any additional suggestions that would help with these behaviors - Tantrums, anxiety, and impulsivity
16:27 CTD Case 2 Answers
16:45 GAMT Case 1 Behavior and Supplements
20:10 Question for the Expert Panel: (1) Are there amino acids that are lacking in patients with GAMT that could be causing anxiety and behaviors (2) Is the timing of medicine important (3) How long does medicine stay in the system (4) Is there a dangerous level of ornithine and/or creatine
20:46 GAMT Case 1 Answers
21:02 CTD Case 4 Behavior and Communication Presentation
25:00 Question for the Expert Panel: Do you have any suggestions to improve his communication and decrease his behaviors
25:14 CTD Case 4 Answers
25:24 CTD Case 3 Muscle Strength Presentation
29:19 Question for the Expert Panel: Do you have any suggestions to help increase his neck control and overall muscle strength
29:28 CTD Case 3 Answers
29:42 Summarized by Dr. Slyvia Stockler
30:57 Announcement of the next meeting: February 1, 2023, and survey invitation