I want to welcome you to Living with ADEM. My name is Elana and I’m the Ben’s Friends intern for this community. It sounds like you have had to deal with a lot over the last few months. I’m so sorry to hear about your son’s diagnosis. My heart goes out to you and your family. I hope you have been able to find some helpful information on the site so far that has brought you some clarity about what is happening to your son. Have you considered creating your own discussion posts? It can be a good way to get advice specific to your son’s situation from other members of the support group. If you are interested, you can start your own discussion post by clicking on the “+” button on the bottom right corner of the homepage. This is a great community with some very supportive members so I hope you will be able to feel comfortable reaching out to them. If you want to communicate with a specific person on the site, you can reach out to them by clicking on their avatar (the circle with a letter or an image next to their username). Please feel free to contact me or one of the moderators if you have any questions about navigating the site.
Wishing you and your son the very best,