Respiratory problems for adult with 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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Respiratory problems for adult with ADEM

Postby mlamb » Wed Jul 22, 2009 6:53 pm

    Hello guys,
    I am posting about some ongoing respiratory problems that my husband is having. He is a 26 year old man who was just diagnosed with ADEM in June. He has been in the hospital for 8 weeks, he has only been out of the ICU for 5 days. He is now on another floor that specializes in respiratory health.

    My husband Michael went into the hospital as a perfectly healthy man with clear healthy lungs. They showed us how his lungs looked in an x-ray right when he went in. He has now had pnemonia for weeks. His lung has been collapsing on and off as they tell me.

    After they gave him a shot of botox to loosen up his stiff neck he developed a strange bacteria in his lungs and we had to wear masks and gowns to visit him etc. We do not have to wear the masks as of two days ago. He has had his lungs suctioned out and they beat on his back to loosen the mucus in his lungs.

    He has a trac in still and is on a feeding tube. He can speak but since there is a trac in there is no sound. He has done a swallow test with grape juice twice and failed both times, though the second test he did better than the first test. He wants to eat and has lost a bunch of weight but until he's healthier he cannot be on real food.

    Today the respiratory doctor said that my husband's respiratory problem is a neuroligical problem, yet his neurologist says that he is fine neurologically and there is nothing that he can do for him.

    My husband is 100% himself mentally and his functions in both hands and arms is returning nicely. His progress is pretty good and we are so happy for what results we do have. He has a stiff neck that is locked in place and now we fear that the botox caused the original bacteria in his lungs so we don't want to have another injection until later if Michael (my husband) is healthy. The botox did help his neck with loosening up but also contributed to headaches but he was relieved to have the neck less stiff for the short time.

    Has anyone else heard of these types of respiratory problems with adults with ADEM? The hospital takes him off the respirator for a day or two and then he's back on. He does well with just the trac mask that gives him oxygen over the mask but the constantly going on and off the respirator is discouraging him. Can someone offer some story or advice that is similar to this or anything at all. I pretty much only trust what I find on these types of message boards as the world seems to know very little about ADEM and it is crushing.

    Thank you for your time, again. I'm the one who posted earlier seeking funds for rehab
    , thank you for all of your nice comments.
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    Re: Respiratory problems for adult with ADEM

    Postby tkeys » Mon Jul 27, 2009 9:23 am

    I am an ADEM survivor (and doing quite well now). I was diagnosed in Feb. 2009 and got released from rehab in June. I didn't have respiratory issues but I can give a little insight about my father's illness and his respiratory problems. My father had an anoxic brain injury (I know, bad family luck) and he was in the hospital almost 6 months immobile. He had a trach and pnemonia many times. With the immobility it was HARD to keep his respiratory problems under control. He is still disabled, but once his immune system recovered and he was physically healthier, he did not have the problems so bad. He now gets breathing treatments (by nebulizer spelling??) 3 times a day, wears oxygen at night, and they beat his lungs before bed then let his bed lay feet up so his lungs drain and he can cough the fluid (or if he can't cough they can suction). I bet that is the main problem, the immobility in the hospital, not the ADEM itself. Plus I know when I had the ADEM it was difficult to cough, if not immpossible. They may need to suction through the trach if he cannot get the secretions out. Hope that helps some!! Good luck and God bless!!
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    Re: Respiratory problems for adult with ADEM

    Postby intarsia » Mon Aug 03, 2009 10:33 am


    I am recovering from ADEM and also had a serious bout with pneumonia. It is likely the pneumonia is not just the lying still in the hospital and the neurological deficits. The steroids used to treat ADEM suppress the immune system. That treatment, which is life-saving, is probably the culprit regarding the weird bacteria AND the pneumonia. My pneumonia last April was clearly a side effect of the steroid treament as the bacteria cultjre showe just normal oral bacteria as the cause. Research on side effects fo steroids list pnemoina as one the most serious and most common.

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