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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Re: My 27 year old husband is a miracle after severe ADEM

Postby azura » Tue Mar 03, 2009 12:30 am

To lora. Hi....

I'm azura from malaysia. I want to apologize because my English usage are very bad. I think u are the one who can understand my feelings now. My daughter has been diagnosed with ADEM in 2007. That time she was only 9 months little baby.

Until now she still can't walk even sit by herself. I feel very sad when she always asked me to bring her to the playground. She want to play with friends because until now her learning process doesn't show any problem. At the age of 3, she can count in English as well in Malay language. She also can recognize a few alphabet. She can speak just like a normal kids.

Now she still under the rehab programme. She goes to her occupational theraphy class twice in a week. I need to hear is there any hope for her to walk and play one day. i always pray for my daughter.
azura
 
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Re: My 27 year old husband is a miracle after severe ADEM

Postby tzwirlein » Sun May 03, 2009 7:14 pm

I am so glad that your husband is doing so well. My 24 year old son, Michael, has been in the hospital with a rare form of ADEM since November 14, 2008. He was in ICU for 102 days and is now in an acute rehab facility. He is still not responding very well, he cannot talk, walk, sit or really do anything himself. He can see and hear and he has started to mimic our facial signs such as crinkling his nose when we do it. It has been so heartbreaking to see him go from a healthy, active young man to someone who cannot even sit by himself. We have to move him into a long term care facility since he isn't responding as fast as the acute facility allows. We know rehab is crtically important - my question - is there anything that really seemed to help your husband the most? His girlfriend, dad and I are willing to help with anything to help him get his life back. We know he is in there and that it will take a long time for him to come back but we are hopeful. I know someone mentioned that the person they knew that had ADEM helps with the University of Denver Pioneers hockey team. My son graduated from there in 2006. He used to attend all the games and I pray that he will again someday. Thanks for sharing your story and giving us hope. Any suggestions or help would be great. Thank you so much.

Chris
Last edited by tzwirlein on Mon May 04, 2009 6:47 am, edited 1 time in total.
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Re: My 27 year old husband is a miracle after severe ADEM

Postby edward » Mon May 04, 2009 5:04 am

Tzwerlein: Sorry to hear about your son. I got hit with ADEM in March of 2008. I was in a coma and life support for almost ten days. When I came to, I was paralyzed from the waist down and nothing worked from the waist down. When I was on life support the docs told my wife we are losing him and there is nothing else we can do. I wll make a long story short for now. Today I can walk , run and oo everthing I did before all this. I have some pain and spasms yet but I can enjoy life again. Its a long hard road but there is hope for your son to get his life back.
Feel free to email me with any questions at ed@townesquaremi.com
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Re: My 27 year old husband is a miracle after severe ADEM

Postby LoraB » Tue May 05, 2009 12:54 pm

Tzwerlein,
I am so sorry to hear about your son. Such a hard thing to deal with. My husband was hospitalized for a long time too. He also was sent to a skilled nursing facility before an inpatient rehab because he was not ready for a rehab yet -- he couldn't talk, sit up, hold his head up, etc. I was so worried. At one point the doctors told me he may never leave that skilled nursing facility and remain there for the rest of his life -- I did not want to believe that and was determined to get him better. So we had a family member by his side almost all the time -- except for when he was asleep at night. Actually when he was in the hospital we sometimes had someone sleep there with him at night too. We would talk to him, do range of motion with his arms and legs, push him around in this chair that laid down flat, etc. We just tried to engage him different activities. We just prayed prayed prayed that he would get better. He slowly started to make progress, and after a month of the skilled nursing facility he miraculously was doing well enough to go to an inpatient rehab. However, it was so overwhelming to think about how much he needed to relearn to get back to being himself. He didn't even know how to hold a pencil in his hand, add, sit up, etc. So we as a family just had to learn to take it one day at a time and only compare his progress to his worst state with ADEM. Grant got sick 3 years ago and I still have to remind myself to only look at how far he has come since he got sick and not compare him to him old self. I honestly think the most important parts of recovery are therapy, time, patience, and trying to have a positive attitude for the person who is recovering. This is not always easy and I have had my moments of just wanting to give up, but your loved one needs positive,encouraging support. We have learned how important therapy is. It has become our life. Therapy, therapy, therapy. We do it all the time still and it has been 3 years. Grant has come so far, but there is still progress to be made. He still walks with a limb, has balance issues, and is still paralyzed in his left hand. He also still has some cognitive issues. However, it is amazing how far he has come, but it has taken a lot of hard work. My little boys think therapy is just a normal part of a daddy's life -- that's all they know -- that's how much therapy we do. I pretty much have had to dedicate my life to getting my husband better. He continues to still make progress-- sometimes it starts to feel like his progress has come to a stand still, but then all of a sudden he makes a big jump in progress. Those plateaus can be frustrating, but that's when you have to keep working hard and it will pay off. Thank goodness for family members who have stepped up and been there to help everyday with the kids, money, etc. Now, you said that your son was diagnosed with a different kind of ADEM. What is it called? Actually, about 10 months ago we flew out to the Cleveland Clinic to see a doctor that grant's neurologist wanted us to go see and get a second opinion about his diagnosis. Grant's case was so severe, rare, and not typical that there was still some questions whether or not he really had ADEM. His brain biopsy also showed microscopic stroke. So we went to see this world-renowned doc who specializes in white matter diseases. He actually ended up giving Grant a little bit of a different diagnosis -- it is the most severe type of ADEM that not only involves demyelination but also stroke and bleeding in the brain. It is called Acute Necrotyzing hemoragic leukoencephalapathy-- the spelling is probably not right. after reviewing all of grant's MRI's, brain biopsy, medical records, etc. he really thinks this is what he had. We know from his biopsy that he did have demyelination and stroke, and he did have blood in his spinal fluid which can indicate bleeding in the brain. However, my brother who is a radiologist at the hospital that Grant was hospitalized at said that they ran a specialized test to see if grant had bleeding in his brain and this test showed no bleeding. So the bleeding is a question. Anyway, the doc at the Cleveland Clinic was speechless when he saw how much damage Grant had had and the fact that he was still alive and functioning so well with all the damage. He said that people with this type of ADEM do not survive - they die within the first 24-48 hours. He was amazed that Grant was alive and functioning as well as he was. The last thing he said to us before we left was keep doing therapy because it is so important. And he wanted us to keep him updated on his progress since people don't survive this type of ADEM. We are hoping that Grant will be able to go back to work in September as an architect. We have sit a goal for September hoping he will feel ready by then -- he actually goes into work 2 or 3 times a week right now just to try to relearn what he needs to -- his boss has held his job for him and has been so kind to give him architectural projects to work on just to help him relearn what he needs to. Grant also goes to a neuro-psychologist once a week who works with him on improving in the cognitive areas that he still struggles with. I hate to tell you this, but you probably have a long road of recovery ahead of you. But don't give up. I would love to be a support to you or anyone who needs it. Please feel free to email me at bascom16@hotmail.com with any questions. Or if you would like to talk to me on the phone email me your email address and I will email you my phone number. I hope this helps. One last thing, honestly I truly feel that our faith in God has gotten us through this. We are religious people and have really learned to trust in God and pray for strength and help through this. I truly believe my husband is still here because it wasn't his time to go yet. Just trust in God and pray for His guiding hand to help your son and family get through this.
LoraB
 
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