Acute Disseminated Encephalomyelitis (ADEM) Support Group

Please help me- I need hope and encouragment


#1

My husband has been diagnosed with ADEM and possible bacterial meningitis. Three weeks ago he had flu symptoms, chills, aches, fever. Went to urgent care, course of tamiflu and cipro (antibiotic). Last week he went to his primary care, as he still had a bad cough. Dr. Told him he had early stages of pneumonia, gave him z pack and cough syrup with codeine, and Tylenol 3. On Monday, December 21 Andi went to the ER complaining of a severe headache. CT scan was normal so they gave him decongestants and sent him home 5 hrs later. Next day, Tuesday 12/22 he asked me to leave work and pick him up for ER. When I got home, he couldn’t walk straight or steadily. In the ER he had nystagmus in both eyes, slurred speech, weakness. Drs did a spinal tap and admitted him to critical care started treating with high dose of antibiotics as spinal tap showed elevated white blood cells. MRI done on 12/23 determined ADEM. Started high dose steroids on 12/24. Meanwhile I was working with insurance and hospitals for a transfer to a better, larger hospital that had more experience with ADEM. We were finally transferred to university of Michigan on 12/26. He showed no signs of improvement and we had planned to start plasmapheresis on 12/28. Tonight I left for a few hours to be with our son, who is 2.5 and came back to find that he was panting, breathing rapidly and had s very elevated pulse. He had a wet sounding breathing the entire time that he has been sick but X-ray on 12/26 was clear. They had a rapid response team come to him one hour ago, and he is now in the Neuro ICU being intubated.

I’m loosing my mind with worry. My husband is 37 years old and healthy. Please give me some hope. Please pray for us.


#2

Hello Blerta, I am so sorry your husband is having this crisis and hope things have improved a little since your post. The communities are, I'm afraid, quiet over the holiday period. Do please let us know how he is doing and we are all holding you both in our hearts at this difficult time. Kindest wishes, JulesG from ModeratorSupport


#3

Hi just hang in there. Please read my blog. There are many successful therapies to treat ADEM but it is a hard and long road. My son was also admitted and only after 4 months of treatment did the lesions finally stop growing. We did steriods, plasma exchange, Chemotherapy (3 rounds of cytoxin and 1 round of Rituxan). He was admitted in April 2015 and only in November 2015 did the MRI show the lesions stopped growing. University hospitals seem to be better at treating these conditions. All you can do it educate yourself as much as possible about the illness. Dr Greenburg has videos on U tube which makes understanding the illness better. https://www.youtube.com/watch?v=BlrUFOj57Lk and https://www.youtube.com/watch?v=gvbgeqJv-2Y. Reading the experiences of others on this site has also given me hope. My son still cannot read but he is able now to do simple maths and can only read on word at a time. Progress is very slow but there is improvement on a weekly basis. I have never felt so much pain in my life so I understand how you feel. He will heal getting the correct treatment but it takes time. All my love to you wishing you strength. I will make a special prayer for you. Your husband is young. That makes recovery very favorable. My son is 31and is at a outpatient cognitive rehabilitation center. The neurologist expects a 100% recovery by November 2016.


#4

Hi Berta! First I want you to know that your husband AND YOU are in my prayers! Your husband's story sounds very similar to my daughter's! She was progressively getting worse, eventually in PICU and intubated. It took several days but she did eventually make a turn for the better and we are seven years out! It isn't an easy road but please know that you are not alone. I believe in the power of prayer and the true probability of miracles! Please let me know if you need to talk or cry or just ask questions! I'll help in any way I can. My direct email has been sent to you separately if you want to contact me.


#5

Blerta, my name is Lynn and I was diagnosed with ADEM in May 2013. I started with the flu and came out of it with ADEM. I had numbness, pins and needles from the bottom of my feet all the way up to my waist. Next day those feelings moved up to my chest and started down my arms and into my hands. Long story short... I was admitted to a well known teaching hospital and placed on IV steroids for 4 1/2 days. I didn't sleep for 2 months after that. Oh well... The steroids did cut down my symptoms, however not completely. I lost my hands, so to speak and had to learn how to use them all over again. Almost 3 years later, I am doing well. I have pins and needles in my hands (completely), HOWEVER, I do everything with them. My large motor skills are fine; it's my fine motor skills that can be difficult. The problem with ADEM is this...everyone had different symptoms and any damage left over can vary. My mental changes are as such...I basically see things as black and white now; I used to have gray thinking, if that makes sense. I'm a little more emotional now, but I do not have any changes that have made me a different person.

What I want to make you aware of is this...your husband can and will mostly likely get better. However, it will probably be a slow and frustrating process. He will need your patience and encouragement. Take one day at a time and celebrated each and very improvement no matter how small it seems. I have to deal with my hands, but I am alive and doing well. I attribute my improvement to my husband who was with me all the way through. Apparently, not everyone has been so lucky.

Unfortunately, not enough is known about ADEM and too few physicians have any knowledge of it. If you have questions, please ask here. We have all been through a lot and can offer information, links and support. If you need to or want to talk, I am available. If you need links for info, I can send some. Take of yourself as well. Lynn


#6

Dear Blerta,

I am sorry to hear that your husband has been diagnosed with ADEM. When my son, Matt was diagnosed I felt completely overwhelmed, heartbroken and stressed beyond belief. This site managed to get me through the worst of it. As you will read, ADEM affects everyone differently but with time things certainly improve.

Recovery happens at its own speed but it does happen. Be strong, ask any questions on this site you may have and rely on your family and friends to help you get through this time.

Much love and prayers,

Simone (Matt'sMom)


#7

Thank you all so much! Your words mean the world to me right now. I'm much more hopeful having read all of your stories. We started plasmapherisis or plasma exchange for Andi today. He had one session and will continue to have a total of 5 sessions, on alternating days. I'm praying that this will be the answer to his struggles. He will also have a second MRI some time today to see if there has been continued lessions.

Send us prayers and good vibes please.


#8

What is your husband's first name so that I may pray for him.

Lynn


#9
  1. His name is Andi, and he is the greatest, most caring, man I've ever met. He works hard and loves his family. Please also pray for our 2.5 year old son, Rory, who has some awareness that things aren't right, but can't process what is going on and just misses his mommy and daddy.

#10

I would be happy to for all of you! Like I said...patience and celebrate EVERY achievement no matter how big. My husband had do everything, his practice, house, cooking and me. He even learned how to make chicken soup with my verbal guidance. It actually made US stronger in the process. I wish you all the best. Remember also...we're here for you all. Keep is updated.


#11

Hello Blerta,
So sorry you are having to learn about ADEM. Yes, everyone’s case is different. The steriod’s should start kicking in to give both of you some relief. It takes patience from all involved. Read our stories to learn more.
God bless you all.
Karla


#12

Hello Blerta,
Plasmapheresis was a godsend for our family when my son was diagnosed with ADEM 2 yrs ago. He was diagnosed during the holidays as well. He was first treated with steroids and IVIG WITH no response. After they started him on plasmapheresis he recovered quickly. Within a week he had woken and was able to be taken off the vent. Sounds like he’s in good hands. I will keep your family in our prayers.
Loren


#13

I will pray for Andi tonight when I pray for my son.

This quote has so much meaning to me now.

"Make your faith larger than your fears. Make your dreams bigger than your doubts." - Robin sharma.

Much love.


#14

Blerta, I promise you he will get better with the plasma and dosage of steroids. He will need cognitive therapy depending on what part of the brain was mainly affected. Mine was cognitive but I’m back at work full time shortly after 6 months after being diagnosed early. He just needs a lot of positivity. Can I ask how old he is?


#15

Thank you all! Your words and ebcouragment are giving me what I need right now. Andi is 37 years young :slight_smile: but probably feels 25 if you asked him.


#16

Hi, Blerta. I'm so sorry this is happening to your husband. This sounds so scary! I'm the mother of an 11 year old who has had ADEM 8 times. I have your husband and your family in my thoughts and wish healing upon you all.

Lauren


#17

Thank you Lauren. I can’t imagine your pain. I will pray that this nightmare ends for you, as well.


#18

Sarah, you mention your blog in your response and I would love to read it. Where is it hosted?


#19

Hi Blerta, I’m sorry you are going through this. My husband came down with flu symptoms 2 months ago and,was in a coma within 2 days. He remains mostly asleep now with some days where he opens his eyes and seems to follow some commands. Sunday I really thought I was going to have a breakdown. The only thing that helps me is just to take it a day at a time. They did the steroids, IvIg and plasma exchange. Now they are giving him a medicine called provigil which is a stimulant used for narcolepsy. The doctors say my husband is young so that’s on his side. Really the best thing you can do is take care of yourself and take one day at a time. Celebrate the days you see improvement and try not to dispare on the days you don’t. It’s easier said than done. Please let me know if any of his doctors come up with anything else to do and I will do the same. You are in my prayers


#20

Thank you Kris. You are also in my prayers. I’ve been told a positive mental attitude is everything- hoping it is something you can apply as well. Sending you prayers and positive thoughts.

My husband had another lumbar puncture today, and his white blood cell count was 6 from 1200 last week. The Drs have said that this is a very very good sign. Keep praying for us, we need all the prayers we can get.