Acute Disseminated Encephalomyelitis (ADEM) Support Group

Update on my son's status


#1

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.


#2

Hi Sarah…
Thank you for sharing …My daughter has her 2nd cyclophophamide today.
She,repeated ivig last week.
Since her relapsed 9 Feb…not much of progression though the mri has showed the lesions not so ‘angry’ (the Dr code that)
May I ask when did your son started to move his,limbs ?my daughter still very tense with her body.,she,not able to move any part of herbody except her eyes and month.
She has so much of secretion that tracheostomy has to be done to help her to breath.Did your son experience that.
Do you mind to be friend with me so that I could keep in touch with you to have,a better understanding of the recovery process? (Oh my daughter is 22 this year)Thank you


#3

I think he started walking not very far assisted with the belt to prevent him from falling after 4 months. (His attack was very severe according to our neurologist) He could not understand any instructions at the 2 month mark. Did not know who we were or who he was. It was a challenge just to get him to sit up and eat. He had to be fed. He could not move at all for around three months. We had to lift him up just to move him in bed. He did not have any issues with his breathing. It will be pleasure to be your friend just ask and I will help where I can. The only way I cope is to read and watch as many documentaries as I can on brain healing. ( U tube - Dr. Norman Doidge/ free documentaries online)

https://www.youtube.com/watch?v=bFCOm1P_cQQ

https://www.youtube.com/watch?v=UMqNcoxf0gQ ( Just to mention a few / u tube will direct you to others as well.

My beautiful broken brain - Netflix

It is important to be positive especially around your daughter. I know from research movement will aid the process. Every case is different but with ADEM healing DOES take place but it is such a slow process. We were so excited yesterday when my son got his first algebra question right. It is almost a year now but the lesions on the left side still has not healed so this is a very slow process. Every little change is is such a blessing when he is able to do even the smallest thing. Let her listen to the music she enjoyed listening to my son responded well to music and used to he click his fingers to the beat of the music. Ask her best friends what music she liked they do not always share everything with us. Stimulate her as much as you can. My son is to receive chemo every six months for the next five years according to our neurologist to prevent a relapse.He had another doctors visit last week. He told us that the the University is working on some breakthrough research and the results will be available in about 2 years to address the relapse issue. My son does not consistently read correctly and do maths correctly and the neurologists says it is okay because the myelin will only grow once the lesions heals but we must practice as much as we can to help him make the connections. Your daughter has youth on her side. The younger you are the better is the recovery. Just hang in there and patience has a new meaning with ADEM. They should give it another name. Please remember to tell her everyday that she is getting better it is important for her to believe that she is getting better.(Placebo effect) All the best to you and your family at this trying time. I would love to help wherever I can.


#4

Thank you very much Sarah


#5

Hi Sarah, I wanted to thank you. Your son’s story gives me hope. We do the same thing with Robert, telling him he is getting better every day. He is slowly improving, and it gets so hard to be patient but hearing stories like yours makes me have hope.