My son aged 31 was diagnosed with ADEM April 2015
My son just did another chemo treatment today. He is physically very strong and responds well to the chemo treatment. The last MRI we did 2 weeks ago showed improvement with no new lesions on the brain. The large 5cm lesion on the brain has split into 3 so there are areas that have healed. The neurologist suggested chemo (Rituxan) . A blood screening revealed that his white blood cell count was elevated and to prevent another attack they suggested chemotherapy. They plan to check his blood levels every six months and do chemo to prevent another attack over a five year period.He is improving at a snails pace. He now remembers my four digit password on my phone. He was a chemistry major at university and has a profound understanding of the periodic table. His biggest issue besides some very unusual behavior is communication. He can read a word or a phrase but has a very low attention span. Normally just about 2 minutes or so.The neurologist is suggesting giving him some medication to improve his attention span. It is important for him to try and read everyday if we are to expect a full recovery.He sometimes cries and he does not know why. He is on the depression medication Cyprexa. I normally play music that he enjoyed and we dance when he cries and it helps to change his mood dramatically. I also periodically play music and ask him who the artist is. We then try and recall events that took place around when the music was released. We have listened to music every day since the ADEM attack and it seems to have helped his recovery. We watch documentaries in an effort to teach him, test his memory and ask questions. I also try and tech him about things that he was interest in mainly computers and science. He does about 20 000 steps a day - walking is key in the recovery process. Every time there is just the slightest improvement we are so elated. He is still at a cognitive rehab center and will be going for 3 days a week from this month. He started stringing sentences together this week and for the first time asked to telephone his best friend but told us he wanted to do this in private. He seems to understand more than he can communicate. The rehab center has diagnosed him with "Wernicke's Asphasia". The lesions on the left side is the cause of this condition. We also tell him everyday that he is healing everyday. It is important for patients to believe that they are getting better. (placebo effect)
Thanks to LauraK's advise we started the Biotin supplements two week's ago. The neurologist said there is no harm in using the supplements so we are giving him 10, 000 mcg daily. The neurologist suggest we try the highest dosage available. We are using Solgar a European brand because of their GMO standards. I am also starting blending vegetables and one fruit for sweetness to flood his system with as much nutrients as we can and will be trying a predominantly vegetarian diet. We are a long way from being 100% recovered and the healing process is slow but we do see slight improvements on a weekly basis. Every week is better than the last. I am enjoying this precious time with my son as he was always so independent. We have good and bad days and my life has changed considerably. But I am hopeful that it will be all worth it in the long run. I hope this information will be a source of comfort to anyone who has ADEM or that has a loved on diagnosed with ADEM.