My 27 year old husband is a miracle after severe ADEM

involves demyelination in the spinal cord and in the brain. The demyelination in the brain is different than a demyelinating attack from MS; the lesions are scattered and do not appear in the same pattern as those from an MS attack.

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My 27 year old husband is a miracle after severe ADEM

Postby LoraB » Fri Feb 02, 2007 2:38 pm

I have been wanting to post my husband's story for months and months now -- we have been very busy with his recovery. He was in the hospital for 5 months with ADEM. I want to share this story to give others hope and support during difficult battles with ADEM. In the middle of April 2006 my 27 year old husband (Grant) came down with a severe headache. It progressively got worse over a couple of days. After 2 1/2 days (April 17, 2002) we took him to the ER. They did a CT Scan and blood work and everything came back looking normal. They gave him strong pain meds and nausea medication and sent him home with diagnosis of general headache or migraine. They told us to make an appointment with his doctor to get migraine meds. We went home and he was finally able to sleep after having pain meds. However, he woke up and his vision was very blurred and his headache was coming back. Later that afternoon he started to get a little confused and disoriented -- he went to take a shower and he couldn't remember how to take a shower. I was going to take him back to the ER but I was afraid they were just going to turn us away again. That night he was in severe pain -- he just laid on the floor moaning, then he finally fell asleep. I slept on the floor next to him. When we woke up the next morning, I asked him how he was feeling and he just starred at me. He finally answered me and his speech was very slow and slurred. He got up to go to the bathroom and his movements were very slow and sluggish. He went into my son's room to go to the bathroom -- I was very scared at this point! I started asking him questions and he was was obviously very disoriented and confused. He thought it was 1997, he didn't know how old he was, etc. I had to walk him into the bathroom and help him go to the bathroom -- he was clueless on what to do. We had a doctors appointment that morning -- I didn't wait for our appointment. We took him to the doctors office and they saw how bad he was -- they didn't make us wait even a minute before the doctor was examining him. After the doc saw how confused and dioriented he was we were immediatley sent back to the ER. The doc called the ER and told them we were coming -- the doc requested a CT scan and spinal tab. They concluded he had either meningitis or encephalitis. Over a couple of days his condition worsened . He pretty much was nonresponsive, but he would yell out in pain. A neurologist was put on his case. Grant had an MRI done -- the MRI didn't look typical of anything. After discussing his MRI with other neurologists the neurologist thougt he had ADEM. Grant was transfered to a bigger, better hospital (Loma Linda University Medical Center). I was very glad they transfered him especially because my brother is a doc a Loma Linda (radiologist). After he was transfered the neurologists at LLUMC examined him immediately -- it didn't look good. He was practically in a coma. Another MRI and spinal tap was done. The neurologist didn't think he had ADEM (his MRI didn't look typical of ADEM). They diagnosed him with meningo-encephalitis or maybe vasculitis They put him on a high dose of steroids. His condition continued to worsen. After being at LLUMC for two days (this was a Saturday) the neurologists decided to do a brain biospy -- he was very seriously ill and they had to find out what was attacking his brain. However, by Sunday afternoon he all of a sudden opened his eyes, was calm, and was started to respond a little. The docs postponed the brain biopsy. Over the next few days his condition continually got better. After a week of progressively improving he was talking again, urinating on his own again, and even walking with a walker. He went to an Acute rehab. The neurologist told us to keep a close eye on him in case his condition worsened again (and we were keeping a close eye on him -- we had a family member by his side 24/7!)
After a few days at rehab his condition did begin to worsen again. He was obviously still ill! He went from walking, talking, urinating to practically not responding again. Grant was quickly transfered back to the hopsital. The crazy thing is he had broken out with a really wierd rash all over his body. The dermatologists said it looked like a Snydone's syndrome rash -- a very rare skin and neurological autoimmune disease. By this time they had soooo many types of docs on Grant's case. The neurologist did put him on steroids again, but he was still being tested for every autoimmune disease, infectious disease, blood disorders, neurological disorders, etc. He had another MRI and spinal tap done. His MRI looked progressively worse than the one when he first went to Loma Linda (the sad thing is my brother, the radiologist, had to be the one to tell us that his MRI looked worse -- this was devastating for us and my brother). The docs sent his spinal fluid to test the California Encephalitis panel (checks for every virus known to cause encephalitis in CA) By this point Grant was nonresponsive. They put a feeding tub in, and he had to be restrained. He also had no movement in his legs. All of Grant's test results kept coming back negative, even Snydone's syndrome. The docs were stumped by his condition. They couldn't pin point anything. They then did an angiogram to look for vasculitis - Negative! They then did another MRI of brain and spin and another spinal tap (spinal tap#4) to look for severe onset of MS! His spin looked fine! The neurologists decided the only other option was a to do a brain biospy and get some of his damaged brain tissue (he had been back in the hospital a week now). However, the crazy thing is the day they decided to do the biospy Grant all of a sudden started responding and somewhat talking again. We still decided to do the biopsy -- it was the only way to really know what was going on! The next day (May 7) the biospy was performed. The neuro surgeon did a rather large biopsy (a piece of tissue to size of his pinky). A white matter specialist became Grant's attending doc. HE was convinced it was ADEM so he started him on IVIG even before the results of the biopsy were back. The biospy showed demyelination and microscopic stroke infarctions. Grant was again nonresponsive after the biopsy. After a weeks course of IVIG Grant started to respond a little bit again. His speech was very slurred (you could hard tell what he was saying) and he mostly only said, "yes, no, ice, etc." (one word answers). After two days of responding, he was becoming nonresponsive again. He just kept going in this cycle as if his brain was being reattacked over and over again. The neurologists tried steroids again. It didn't help -- it just made him agitated -- he would yell and moan with his eyes closed hour after hour after hour! Nothing would calm him down and he wouldn't respond to anyone. (By this point it was the end of may beginning of June) By this point the neurology team called Dr. Irani from Johns Hopkins. He suggested plasmapheresis then a chemo drug. The docs tried plasmapheresis. Grant got two treatments of it when his body went into couagalopothy (his blood wasn't couagulating) and he was bleeding at the cathetar site. After a couple of days the bleeding got worse. His hemoglobin dropped to 5 and his blood pressure was down to 40/30. The docs quickly put him back in ICU under an ICU team of docs. They immediatley did a 6 unit blood and plasma transfusion. The docs thought that this was it -- he wasn't going to make it! I and all of the family was just devastated after all that we had been through so far! I starting planning his funeral in my head, even though I still had a glimpse of hope in my heart. Miraculously he pulled through it! His blood pressure went back up and hi hemoglobin went back to normal after a few days. And he actually was very calm and responding some too. The plasmapheresis seemed to help some because seemed to improve over the few days after getting over all the complication of plasmapheresis. However, the docs wouldn't do any more plasmapheresis treatments. He could have an opposite reaction the next time and have blood clots. Again, after a few days of progression, Grant started to regress again and became nonresponsive again! The attending neurologist at this point (the attending neurologist changed every week! This was horrible!!!!) said that there was no hope for him and they were reconsidereing his diagnosis because he was responding to treatments! The attending do said he would probably wouldn't survive and if he did he wouldn't ever function again. This was the worst day of my life . They started to consider stroke and starting testing for very rare diseases that casued stroke. They wouldn't give him any treatment at this time -- they wanted to wait for the tests results which took over a week to get. I was so mad -- we were very seriously considering transfering him to UCLA or somewhere else. We really wanted them to try the chemo drug but the attending doc refused -- he was convinced it was stroke. The next attending doc was just as negative as the one we just had! He would only try steroids again! In the meatime all the stroke tests came back negative. After a couple more weeks of Grant not getting better (it is now the middle of June) we had another new attending neurologist come on the case! She was an answer to our prayers. She was sooooo nice and wasn't going to give up on Grant. She decided to try IVIG again, then after his course of IVIG she was going to put him on cytoxin (a chemo drug)! This is what we wanted for a month now!!! So Grant had IVIG and started doing a little bit better. He was then put on the chemo drug and he seemed to be pretty stable making slow progress. He was starting to be able to eat purred food. His MRI showed no progressive damage. After two weeks of being stable, Grant was finally discharged from the hospital. He was sent to a skilled nursing facility -- he still wasn't really talking, he couldn't move his legs still, his left arm also paralyzed, and he was so weak he couldn't even sit up or hold up his own head. Over the next month in the skilled nursing facility, he slowly starting talking (not real clearly) and he started to move his feet and legs. After about a month he made enough progress to be able to go to an acute rehab! He was at Loma Linda Acute Rehab for 5 weeks, then he was able to come home In September, after being away from home for 5 months! We feel so blessed that he survived and his recovery and progress has been miraculuos! All the neurologists are shocked at how well he is doing! He had to have surgery on his feet (tendon releases) because his feet dropped sooooo much. He had surgery in october, and he started learing how to walk again starting in Decemember. His speech, memory, strength is slowly getting better! It truly is a miracle! With faith, hope, and trusting in God, miracle can happen if it is the will of God! He still has a very long way to go, but he has been so courageous and such so determined to get better! I am so glad that my two little boys still have their daddy, and I still have husband! Life is still very hard and frustrating sometimes, but we still have faith and hope in our hearts as Grant recovers. We are learning patience and learning about what's really impotant in life! Grant is still on cytoxin, was on copaxone for 6 months, and his Neurologist ( a white matter specialist from Loma Linda) has done a lot of research on Grant's case -- after finding some very similar cases he is 99% sure Grant had a very severe case of ADEM. We expect his recovery to be a good 3 years! Hopefully by then he will be able to go back to work -- he was an architect (and still is at heart) before all this happened! He still doesn't have movement in his left hand or wrist, but he now can move his shoulder and elbow! We work really hard to exercise his left arm -- he is going to get botox injections in two weeks to relax his wrist and lower arm muscles! He goes to outpatient rehab 3 days a week for speech therapy, occupational therapy, and physical therapy. On the days that he doesn't have therapy, I do therapy with him at home, or the nurse that comes and helps twice a week does therapy with him! This trial has made us stronger, more compassionate people and I hope this miraculous story of survival the continuing miraculous progress gives others who are affected by ADEM hope!
LoraB
 
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Postby amanda » Fri Feb 02, 2007 4:24 pm

Thank you for sharing your story Lora, it is truly inspirational. I hope your husband continues his recovery.
Amanda
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hoping you can help answer some questions

Postby MamaC » Sun Jul 08, 2007 1:05 pm

I am trying to talk with someone who was in a coma. My 19 year old niece was diagnosed with adem June 30. It hit her suddenly and within hours she was in a coma and remains unresponsive at this time. Today is july 8. She has been getting steroids, and my brother said tommorrow they may start plasma transfer, I believe that is what he called it or immunoglobulin therapy. From everything I have read I'm afraid they are not moving fast enough. She has always been healthy. I'm worried too because it seems like most people had warning signs, she woke up at 3 am and her arms were numb and she could not see. She had been tired a few weeks before that but nothing that would raise red flags. The last time she talked which was incoherent was that morning at 8 am. I am so encouraged by your husband's story and I know my niece will make it. I hope to hear from you and I will pray for your husband and family. mamac
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MamaC

Postby bahession » Fri Jul 20, 2007 10:11 am

I have just read about your niece. I know how very difficult it is to have to just watch the person you love lay there and there is nothing you can do. Believe me I know. My son had a sinus infection and on September 12, 2006 he called me to tell me he had to go to the doctor and would I be able to drive him. I said yes and by the time I got to his house, he couldn't walk or talk. Took two of us to get him to the doctor who sent him straight to the hospital. They didn't know what was going on so they wanted to keep him over night. The next day he was worse and within three days he was in a coma in ICU and he remained in that state for many, many weeks.He was a strong, healthy male with no problems except for the sinus infection. The doctors did many, many procedures from CAT scans, numerous MRI's, 8 lumbar punctures- 4 were not successful and then they did IVIG, plasma pheresis and on an on. The last thing he had was a brain biopsy and that helped them make the diagnosis. No one had seen this and because it was deemed rare no one really knew how to treat him. Finally a doctor at the Mayo Cllinic was called and he said they were doing the right things, but that it just takes time. It destroys the gray matter and the white matter in the brain and in Kevin's case it put a lesion on the mylan sheath surrounding the brain stem. They had actually told me that I might have to decide what was going to happen. He had over 40 doctors and his medical bills are over $1 million. I can go on and on, but I need to tell you that you can make it and it's the hardest on the people who have to watch this happen. I have no one to help me, my husband was killed in 2000 and my best friend helped me the most. You have to lean on family and friends and please know that if I can help you in any way I will. You don't have to answer my next question if you don't want, but what city is she in and in what hospital. I have done hours and hours and hours of research on this and I have a lot of information. I know how frustrating it is when they can't make a definite diagnosis, but it's very hard and in Kevin's case the brain biopsy was the best thing. Sure it was dangerous, but we had such a super doctor I felt very comfortable making the decision to have it done.
Kevin has never had one bit of pain and for that I'm extremely grateful, but most of his procedures were painful. I'm just glad he never knew.
I found that the only thing you can do is take it one day at a time. Please let me know what I can do or how I can help. If you want I can e-mail you what I have on all this. I even have video's on it. Just let me know and please know that my thoughts and prayers are with you and your niece.
Barbara
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MamaC

Postby bahession » Fri Jul 20, 2007 10:22 am

Sorry, I had to quit because we had a fire alarm here at work. What I wanted to tell you was don't give up hope. Kevin is now 10 months into this and he is doing amazingly well. He now does almost all the things he did before, except that he has problems with his hands and he has learned to compensate. Please ask the doctors to order passive range of motion on your nieces hands, arms and shoulders. The docs told me that if someone had done that for my son, his hands wouldn't be so contorted. He has no spasticity.......his right hand is the worse, but it is improving and they have made him a special brace. When I look back to the months and months he just laid there I know how far he's come. He just doesn't know. He can't know, he can't remember and sometimes that's good. For many months I had to hand feed him and now he eats just like you or I and he can cut his own steak. Now he's asking to help mow the lawn and believe me that is about as good as it gets. We are going to try it next week. So, please know that there is a light at the end of the tunnel and you will all make it. Please keep in touch. I would love to know how your niece is doing from time to time.
Barbara
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Postby Lynne » Mon Jul 23, 2007 4:13 am

Even if the doctors do order range of motion that is frequently not enough. Have therapist show family members how to work with the extremities and then do it frequently through out the day when you vist. Not only will this help the patients but it is a great way for family members to feel like they are actually doing something to help and the pyhsical contact is great to have.
Lynne
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To Mama C

Postby Vickie B » Tue Jul 31, 2007 6:34 pm

My daughter did not have a coma but back in March of 04 she was paralized on the right side. I have a post , Steriods, Plasma-pheresis, IVIG and Cytoxan. Look this post up aand you will read her story. As I said we did not have a coma however you should press the Doctors for what is next. We didn't get through the IVIG bottles when very drastic measures had to be enforced. She would have been paralized on the other side. I know if you think this process is slow... then it is. Lisa has ADEM.
Good luck.
Vickie B
Vickie B
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About movement

Postby Vickie B » Tue Jul 31, 2007 6:44 pm

Again my post is up on this site back in 04. After the first day in the hospital my husband and I began to move Lisa's arm and leg. We formed our own routine of PT everyday. Time was lost because she was in the hospital for 1 month before receiving PT since she was so ill. I will say that working the muscles and taking charge is what a patient needs. We also made motivational tapes to have her visualize that her right side was able to feel movement and the network was connecting through power of suggestion. All of this did wonders for her. Do not let things go and make sure if boots are given to wear in the hospital make sure they are on. You do not want to deal with a drop foot.

Lora
I am so glad that Grant is doing better.
Vickie B
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About movement

Postby Vickie B » Tue Jul 31, 2007 6:55 pm

Again my post is up on this site back in 04. After the first day in the hospital my husband and I began to move Lisa's arm and leg. We formed our own routine of PT everyday. Time was lost because she was in the hospital for 1 month before receiving PT since she was so ill. I will say that working the muscles and taking charge is what a patient needs. We also made motivational tapes to have her visualize that her right side was able to feel movement and the network was connecting through power of suggestion. All of this did wonders for her. Do not let things go and make sure if boots are given to wear in the hospital make sure they are on. You do not want to deal with a drop foot.

Lora
I am so glad that Grant is doing better.
Vickie B
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Re: About movement

Postby j_the_mad_painter » Wed Aug 01, 2007 7:50 pm

Vickie B wrote:Again my post is up on this site back in 04. After the first day in the hospital my husband and I began to move Lisa's arm and leg. We formed our own routine of PT everyday. Time was lost because she was in the hospital for 1 month before receiving PT since she was so ill. I will say that working the muscles and taking charge is what a patient needs. We also made motivational tapes to have her visualize that her right side was able to feel movement and the network was connecting through power of suggestion. All of this did wonders for her. Do not let things go and make sure if boots are given to wear in the hospital make sure they are on. You do not want to deal with a drop foot.

Lora
I am so glad that Grant is doing better.



Hi all,
Vickie is absolutely correct. Being motivated and using visualization techniques helped a great deal for me when I had ADEM 4 months ago. Also, the boots are essential. For any patient with this disease it will feel like being weighed down by a ton of bricks, but...it is far better than having the foot drop.

MamaC, I hope your niece is going to be ok. My prayers are with her, you and your family!

Barbara, I'm also glad that Kevin is doing much better. It is inspiring to hear how far along he's come after surviving this terrible illness.

Lora, I read your story and I must say you are extremely supportive of your husband, and I'm sure he appreciates it. Good to see he's doing better, and I commend him for his courage.
Our stories are pretty similar- I got hit with ADEM last March '07. Had a coma for several days before coming to and not feeling or moving my lower half of my body. My wife (my fiancee at the time) helped me get through this. She never doubted that I would recover. I didn't know how and what the future held for me, but I believed her.
So, in April 14, I married her (in the hospital, no less)!

If you are ever visiting Seattle at some point, I'd love it if my wife and I can meet you and Grant. I'm still recovering too. It's a hard struggle, but I feel blessed to have a most precious woman with me, expecially now. I'm sure Grant must feel the same.

There is nothing like the love of someone to keep you going, no matter how bad the odds seem.
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niece back home

Postby MamaC » Thu Aug 02, 2007 12:21 am

thanks to everyone who has given us such helpful advice. My niece is finally back in Indiana at a rehab hospital. She is awake now and laughs when something is funny. she not only wiggled her toes on her r foot but PT put a brush in her r hand and told her to try and brush her hair and she lifted her arm toward her head. There is going to be a fund raiser for her on Aug 10. The outpouring of support has been amazing. We are truly blessed. Ashley has always loved life and I know she will continue to improve everyday. I can not say enough how much this site has helped us and will continue to help us when we have questions. Thanks to the input Ashley is getting aggresive physical therapy. She has boots now to help with foot drop. We realize we are on Ashley's time and we will all try to be patient.
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Update on ADEM

Postby bahession » Thu Oct 18, 2007 11:21 am

I promise not to make this to long, but I just wanted to update everyone on Kevin's condition. He has improved immensely and is now 13 mos. since the onset. He continues with warm water therapy and PT, OT and speech. His neurologist saw him about a month ago and his comment was that he feels Kevin will have a 95 to 100% recovery. He did tell us that it takes 1 to 3 days for 1 mm of nerve to grow back and because Kevin is so tall and his arms and legs are so long it will take about 600 days. His right arm is improving and he is able to do most anything with it. He is now mowing the lawn and has gone back to hockey. No, he's not skating yet, but he is an off-ice official for Denver University Pioneers and works the instant replay. He was very nervous the first night but is now doing better and enjoying it. He still cannot drive, but it doesn't bother him. So, for all of you we want you to know you can get better. Kevin says it takes more work that you will ever imagine. He faithfully does his stretches and exercises every day and walks for miles. He has lost his limp. I can see improvements on a daily basis. He says that he finally got the feeling back in his feet and his mouth is still numb and the ADEM is still in his wrist and moving down to his hand. We are so very grateful and if anyone wants to talk to him or find out anything please let us know. It's time for payback and we would like to help all of you. Just let us know.
Barbara
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Re: My 27 year old husband is a miracle after severe ADEM

Postby mmclane » Tue Dec 09, 2008 11:57 pm

Thank you all for your stories, after 2 brutal weeks, you give me hope when we need it most.
My 19 year old daughter has experieced similar experience as LoraB's husband except my daughter in 19 and had no symptoms. She went from difficulty walking, losing bladder control on a Friday night to coma by Sunday. We took her to ER on Friday and they found nothing -told her she was anemic and to take iron pills. That night she was fallin down more and we took her Saturday. By then she was tallkinh strange and veliggerent (not her style) and after 10 hours they released her - possibly conversion. By Sunday she was screaming and we had to call an ambulance to take her to ER where they first suspected mental illness but after an MRI suggested it was possibly a rare form of MS such as Balo disease. We are still in the hospital 3 weeks later and J is still in a coma after 10 MRI's (which she must be sedated for), 8 x-rays, 2 CAT scans, 1 brain biopsy (inconclusive) and every blood test they can think of. They are treating her for ADEM however not sure so they took her off the steroid & plasmaphresis tratment to do another MRI which proved a worsen conditionw ithout treatment, Tomorrow they are doing another brain biopsy and I am scared but maybe this time we will get lucky enough to get an actual diagnosis. The clock is ticking so any advice or Dr referrals would be greatly appreciated.
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Re: My 27 year old husband is a miracle after severe ADEM

Postby alini » Wed Dec 10, 2008 7:56 am

hello,

I am a french 37 years old girl.Please forgive my approximative englih. I had severe ADEM in November 2006. I am still in recovery, now walking with 2 sticks, but not quickly enough and no longer enough to me. I am also an architect, and i would like to know how's Grant? Thank you and be trusty.
alini
 
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Re: My 27 year old husband is a miracle after severe ADEM

Postby edward » Fri Dec 12, 2008 11:57 am

LoraB
I read your story today, I had ADEM this spring, in a coma for 8 days , hospital for 16 days. paralyzed from waist down when I came to.
This is the first time I have read anything about ADEM, I have not wanted to till now. I didnt want any bad news . I am still dealing with issues now, 8 months later
Any one else out there I would love to talk to and share expieriences. Iam still in pain everyday but feel Iam still gaining
edward
 
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