Symptom & Treatment Checklist for Your IEP

Quick Overview

The ASF Virtualpalooza conference concluded with a presentation on a new resource for families dealing with Angelman Syndrome (AS). The resource is a symptom and treatment checklist that can be used in conjunction with an Individualised Education Plan (IEP). The checklist, created by Dr. Lynne Bird, is designed to be filled out by a physician and includes a list of symptoms common in AS, a description of each symptom, potential interventions, and a space for personalised notes. The document is intended to be a living document, with feedback from the community welcomed to improve it. The checklist is available for download from the ASF website and plans are in place to translate it into Spanish and other languages.

Introduction

Good evening, and thank you all for attending the last ASF Virtualpalooza. It has been an honour and a pleasure to be with you the last three weeks every evening. All of the sessions are now uploaded on the ASF website under the ASF Virtualpalooza Conference, where you can access all the webinars, presentations, and Q&As.

ASF National Walk

As always, please sign up for the ASF National Walk, the virtual rally coming up on September 5th. We have a lot of stuff in store for you all, so please make sure that you check that out and sign up for it.

Introducing Dr. Lynn Bird

Tonight, we’re happy to have Dr. Lynn Bird here. Dr. Lynn Bird has been in the AS community for almost 20 years. She is knowledgeable with our community and works tirelessly to provide the best clinical care for our community. We also have Harvey Martin on with us tonight as well, because what has been created is something that can accompany your IEP, and we all know that Michelle is our IEP expert.

The Symptom & Treatment Checklist

Dr. Lynn Bird has created an amazing resource that you guys will have first eyes on and first access to before anybody else. This is a four-page document, and this is what the top of the first page will look like. Your physician would enter in the name of your child and birth date, and there’s a place to indicate the flavour of Angelman syndrome, deletion, UPD, whatever, if it’s known.

How to Use the Checklist

The checklist lists the symptoms that are present in many, if not most, or sometimes just a few patients with Angelman syndrome. Your physician could then just check off what applies to your particular child. For each symptom, there’s a little description of what the symptom means there in column three, and then the fourth column over has some potential services, support interventions that one would apply to that particular symptom.

Final Thoughts

This is a living document. It is something that is not set in stone. Your input is definitely welcome. Please send your comments about how to make it better. It’s a toss-up between trying to provide as much information as possible, but also keep it a manageable length document. But if you’ve got ways to trim in some areas so that we can expand in other areas, that would be fantastic.

Conclusion

Thank you all for your time and dedication. We will continue to work on this document and welcome your feedback. We will also work on an expanded version and translate these versions as well. Stay tuned for that.