Hi Blerta and Langerton1,
I just discovered this forum. I am a patient who survived ADEM with a coma for 6 weeks and recovered. I want to help you all out as best as I can to give you from the perspective of a patient because I understand how tough it is as a parent or spouse to see it & experience it in person.
Blerta: the fits of anger/rage relate to the difficulty that your husband has with dealing with this situation. It is very frustrating to be in that situation and see you unable to perform tasks that you were easily able to do before with ease. You tend to put a demand on yourself that was never there before and that frustration gets directed to unfortunately the immediate family. It’s good to see that he’s back to work. It’s best to keep calm and provide him with assurance that you and your family are there for him. Patience is key.
I did the exact same thing when i was sick and my parents and siblings told me I was never like that before. I want you to believe that things will be back to normal in time because hope is what will keep you going.
Lagerton1: myelin regeneration takes some time. Each patient is different. Daily vitamins are important as well as excercise but overall it’s tough to say. I would recommend doing some puzzles or crosswords with your daughter or anything that stimulates her brain. It helped me along the way. It also helps her communicate better orally and visually which also helps with regeneration of myelin and connecting synapses in the brain. Hope that helps.
If either of you have any further questions or anyone else, I am more than happy to help.