Hello, My name is Laura, my daughter is Danielle she is 24 yrs old. July 1st 2016 she was brought in to Renown because she unresponsive. They ran some test and first they told me she had MS and now its ADEM. she has done all the steroids and two other treatments, she had a brain biopsy a week and a half ago and while on the neuro floor Saturday 3rd 2016 she coded. She is now in ICU and started doing the plasmapherisis, so she has been here in hospital 2 months. I am so worried she will never be the same again. she has 3 children that have not seen her since she got sick. please help with some advice and encouragement.
All I can tell you is that there seems to be some others that were in a condition similar to Danielle and they did improve. As far as her future condition, she may have some residuals, but it sounds like she has a lot of support to help her through it all. Like I believe I mentioned before, improvements will probably be slow. Celebrate each and every one. When you question the speed, think back about how she was when she went into the hospital, then think about how she is at that moment. My husband kept saying to me when I got frustrated, could you do this last week or 3 months ago. My progress was slow, but now a little over 3 years and I am doing well. I have some minor residuals, but hey, I can live with them compared to the day I was diagnosed. A funny moment…I was in the hospital for 4 1/2 days and when I went in, my hands didn’t work at all. After 3 days, my husband crumbled up saltines and threw them into my lap and said “Now, pick them up!” You’ve got to be kidding… Guess what, I actually was able to pick some of them up. You’ve got to celebrate EACH AND EVERY little improvement. People of the site are praying for you all. Please keep in touch with us and ask questions if you have them. Lynn
Hi my name is Sarah. My son aged 32 now was diagnosed with ADEM April 2015. He is getting better very slowly. I hope she recovers sooner than my son. He still struggles to read and write but he is much better than last year We see improvements all the time but it is very slow. The good thing with ADEM is that it is not degenerative the brain heals and recovers but it just takes a long time. My son was in hospital for around 4/5 months. He is still at a outpatient cognitive rehab center. But every month he is better than the last. There was a time he could not speak. His vocabularly and speech is constantly improving. This is the hardest challenge we have had to face but we just take one day at a time. Focus on the slight, little improvements. This site have very helpful information about ADEM. https://myelitis.org/living-with-myelitis/resources/resource-library/. Listen to the podcast relating to ADEM. They have given us so much hope. It depends on the severity of the ADEM attack some people have reported less severe attacks. We still see improvements constantly but just very slow. Every month is a blessing as he gets better all the time just very slowly. ADEM is a hard lesson in patience. Please feel free to contact me. My son did steriods treatment, plasmapherisis and eventually chemo to stop the lesions from growing. The also did a biopsy. My neurologist is confident that my son will make a 100% recovery but it is going to take time, He believes cognitive therapy is important but according my own research exercise also helps with recovery. There is a wealth of information available on this site if you read everyone’s stories. I will pray for your daughter as well when I pray for my son. Please tell her everyday that she is getting better. I have done this since the day he was diagnosed with ADEM. I read a book called the Placebo effect and has many interesting stories of how belief has aided recovery from illness. My thoughts are with you and your family at this difficult crossroad in your life but this too shall pass.
Good evening Lagerton1. Thank you for sharing your experience. Give yourself some time and space. Give yourself space for the bad things and space for the good things. Right now there isn’t room for anything other than the horror. That makes sense. There is more too it though. Your daughter is still your daughter. You made many happy memories. They still exist. Now are new memories. Give it time to see what happens. This is more like a marathon then a sprint. In fact, this will be the longest run of your life, but you will embrace it and dare I say even enjoy it because the love you have in your heart for your daughter is infinite. Don’t feel like you are responsible for moving the world; just share the love and support that you have inside, the thing that doesn’t exhaust you, because that is what your daughter will value the most.
I am sorry for what you and your daughter are going through but i think ADEM is much better to have than MS. My doctors said since ADEM is acute and MS is a chronic lifelong disease, it would be “one and done” with the ADEM episode. I feel fortunate. Even though it takes a lot of time and patience while healing, the outcome should be nearly 100% so please reassure your daughter.
My son if continually improving we are still a long way off but he is now able to write short sentences. His vocab is becoming more extensive. He is just starting to reason. I remember when he did not recognize us at all and I prayed to God just to get a phone call from him. Today I received that phone call 17 months later. My cup runneth over. I received a written message from him too. I feel so blessed and I am convinced he is getter better. I know there is still a long road ahead with some ups and downs but these little blessings brings us so much joy. Your daughter will be fine it may just take awhile. Although it has been a very difficult experience it has forced us to slowdown and enjoy the simple things life has to offer. Celebrate every milestone she will get better.
This a very good sign. It sounds like he’s turning the block…not just the corner. I am thrilled for you all. Lynn
Update 09/25/2016, My daughter Danielle is at Stanford hospital she has been there a week today. They have been wonderful, she is opening her eyes now, breathing on her own, and now on a chemo drug. We are still not 100% on what she has. went from MS, ADEM, Menengoencephelitis, then whipples, and now they are looking at Susac syndrom. all is autoamune all treated the same. Prayers prayers and more prayers. Thank you for all of the uplifting life stories they really do help and give me so much comfort and help.
Sounds like you’re in the right place. Please keep us updated. I’m still praying…
Thank you so much Sarah, I will keep your son in my prayers as well. Sending you huggs Ms. Laura
Update 09/28/2016: I heard from Nuro doctors from Stanford last night, they confirmed her diagnosis as Susac Syndrom, they are working on a treatment plan and then sending her home to Renown Regional Hospital here in Reno NV. with everything i have read on Susac i pray they have not took to long to diagnose her
Thank you so much for this uplifting message, I really needed to read this.