Acute Disseminated Encephalomyelitis (ADEM) Support Group

Please help me- I need hope and encouragment


#61

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.


#62

Hi Jay thanks so much for your advice. My son was diagnosed April 2014. He has been at a Cognitive rehab center since then and we feel blessed that every month is better than the last. The neurologist says another year for recovery. He seems to understand more than he can communicate. He was diagnosed with Wernicke’s Aphasia. Most of his lesions are on the left side of the brain and has not completely healed. Our neurologist also lectures at a university hospital and is known to be very knowledgeable with regards to ADEM he says my son will make a 100% recovery but sometimes I wonder if this will be the case with him. There is recovery but it is just taking so long. My question is are you cognitively the same as you were before the ADEM? Where you on depression medication? We tried to wean him off one of the depression medication but had to go back on the drug as he became increasing agitated and unbearable to be in his presence. He seems to feel less agitated when they put him back on the depression meds. My concern is that he is on so many drugs but it is the only way he seems to be coping. He is on two depression meds, meds for muscle spasms and adderall. Where you on drugs and if you where you able to be successfully weaned off the drugs? He is 32 and hurts to see everyone around him move on with their lives and he is struggling just to read or write. He was highly intelligent and always did exceptionally well at school and work. It hurts so much to see him struggle to communicate or just try and write down a sentence but I am grateful and feel blessed that there are constant improvements.


#63

Hi Sarah,

You’re welcome for the advice. I’m happy to help.

I strongly believe your son will recover 100% but it takes time so you need patience. those lesions need to heal and since it’s in the brain, it takes longer. for example if you had a cut on your hand, you heal very fast because your immune system kicks in right away. However, the brain healing process takes longer. I’ve tried reading articles on the brain healing process, but it’s not as fully known about as compared to other body organs. I would celebrate each success your son has because it really is important for not only you, but him because it gives you that morale boost.

I am relatively close cognitively to what I was before ADEM but my family tells me I was much quicker intellectually before than now. It just means I have to work harder than I did before to grasp complicated material. I see it as an opportunity not an obstacle. I still see a neurologist as well as keep in contact with 2 other neurologists who helped me that tell me it is a gradual process for my brain to recover & to be patient. Something i’ve been doing since I started recovering is to read a novel/book every day & speak out loud so that my speech and cognitive processes work together.

I was not placed on any anti-depressants medications. I was only on valproic acid to prevent seizures. The problem with depression medications is that they are tough to wean off of so I understand your son’s difficulty. On top of that, he’s dealing with a tough situation and it makes taking anti-depressants a bit complicated. Adderall is for ADHD I believe. Muscle spasms will go away eventually. Ya i would be concerned with him being on so many meds. I was successfully weaned off my medication within a month or so and never placed on any more at a later time.

Your son should be proud of his achievements regardless of how others his age are doing. I found it never helpful to compare myself to others because we all lead different lives and life is unpredictable. I know it’s not easy for your son at age 32. I was 16 when I had it and I can still remember seeing people my age enjoying things I was unable to do such as playing sports, driving a car etc. Your son will get back to that top class form because he always had that potential in him and never lost it. You never realize how tough it is to perform simple tasks such as writing a word or sentence until you’re faced with it. I recall I could barely write past 4 letters at first. Please have patience and give him motivation as much as you can. If not for family and friends, i would have never recovered so well.

I hope that helps and answers your questions. Always feel free to ask more questions if you have any. I know it’s not easy but hang in there.


#64

my daughter cannot communicate as of yet, she looks at me when i am next to her, she moves her feet when i tickle her toes. she does look at me but we dont know how much she can hear or see. she is still on breathing vent trach and the PEG for food


#65

Doctors are saying they dont feel she will recover,


#66

Hi Langerton,

I believe the fact that she’s conscious, able to look at you & can move her feet does say quite a bit about the positive aspect of her health.

I’m unsure as to why the doctors believe she will not recover. Recovery takes some time as your brain slowly re-connects those previously damaged brain connections. Some of her motor skills seem intact. The breathing aspect has me concerned. Did the doctors explain to you exactly why they have that belief?


#67

Hello Jay thank you, We lost my daughter Danielle wed due to her disease. I pray we find a cure


#68

Hi Lagerton,

From all of us at Ben’s Friends, our hearts go out to you. We’re still here to support you during this difficult time, so please do not be a stranger.

Meli, Seenie, TJ at Mod Support


#69

Jay,
Thank you for sharing your story and support to Sarah. Only someone who has been through this process can truly understand. Lynn


#70

I am so very sorry to hear! My thoughts and prayers are with you!


#71

I am very sorry to hear about your husband. I have hesitated to write on this site because my own experience is not very pretty. The symptoms of ADEM wax and wane for a long time after the initial onset. You might want to keep notes re what tests were done, test results, and get copies of all reports. I had 3 separate binders that saved me and my family a lot of time when we saw someone new. I am keeping my fingers crossed for your husband and your family.


#72

I am soo sorry for your loss but Thank you sooo for sharing that! I know 1st hand what you’re going thru. Feb 9th 2015 my amazing 31 yr old daughter, who spent her days as a pediatric nurse caring for others & her nights as a loving, devoted mother of a 5 yr old son, was taken to the er (for the 2nd x in 3 days). Within hours she was unresponsive & flown to KU Med where she was diagnosed with ADEM. From that point on her condition progressed similar to your daughter, only at a much slower, more prolonged rate. On Sept 3rd 2016 (almost 19 months later) she lost her fight with this awful disease. And it wasn’t until I saw your post that I was able to share this. I still pray everyday that they find a cure or at least better ways to diagnose & treat this disease very soon!


#73

Malinda,
I am so sorry for your loss. May her memory be eternal!!! What is your daughter’s first name so I may pray for her,
Lynn


#74

OMGoodness, sending so many huggs, im there with you sweetie. I would really love to talk to you and get her story. I work with a wonderful young lady who had ADEM and she has been helping me through this. She has been helping me to wrap my brain around what happened to my daughter. Susac and ADEM are so much the same because of them being autoimmune disorders, and are treated the same with the steroids and ivig. my personal email is ■■■■■■■■■■■■■■■■■■■■■ email me and i will send you my phone number. thank you so much Laura Agerton


#75

Her name is Mandy…& again I want to thank you, for your prayers & fellowship. As a member of that club that no one wants to belong to, I’ve found my greatest comfort with either those who knew & loved Mandy (which was pretty much everyone she met), or those who have actually lost a child. No one else can begin to understand that ever present emptiness that we feel or those questions of ‘was there something I could/should have done’. It’s almost like we somehow failed at the most important job we ever had.


#76

Malinda,

I will include Mandy in my prayers for those that have fallen asleep in the Lord. I know Mandy is looking after you. Take care of yourselves!!! Lynn


#77

Hi Breta
I feel happy to hear that your husband has shown good recovery and has joined back work.I am also dealing with this scary disease as my husband too is diagnosed with this in MAY 2018. He is in hospital for past 50 days. After IVIG treatment and high dose steroids he has shown some improvement but still not able to speak. He is having his food through tube and confined to bed, though he can move his limbs but can not bear his weight on legs. Please tell me was your husband’s speech also lost or he was able to speak initially as well. I want to know how much time it can take to get the speech back. Your story fills me with hope that my husband too can recover.
I also have kids to take care of who are very young just 3 years old . I can relate to you so much.

Thanks


#78

Hi Nidhij!
How is your husband doing? Is he still on the high dose of steroids?

My husband’s speech was not lost, though he could not communicate due to a tracheostomy. He did have to re-learn how to walk, use his arms, and feed himself. He was also having his food through a feeding tube as well, and they had to complete a few swallow studies once he started to get better to make sure he could still chew and swallow.

I’m sending prayers and thoughts your way; keep your spirits up. I understand how difficult this is for you, I remember feeling powerless and desperate for answers and prognosis.

Blerta