Dual Diagnosis – GBS and ADEM???
AnonymousDecember 28, 2006 at 10:34 pm
My sister tells me that her boyfriend, who originally diagnosed with GBS around Thanksgiving, now has a dual diagnosis of GBS and ADEM, because his central nervous systems was affected too.
He is now in a rehab center for close to 2 weeks; his progress is minimal, he can just move the fingers on one of his hands and he can feel you touching him. He is speaking clearer thanks to the speech therapy, his vision comes and goes though, his color is good, and she noticed that this week there is no strap around him while his bed is in a sitting up position in the hospital. He never had to be put on a trachea after 10 days on the vent, which is a miracle. She says he is very eager to work hard in rehab; and was pretty depressed on Christmas when there was no rehab scheduled. I encourage her to take care of herself while she is being supportive to him – and she is; however, she is committed to not abandoning this man during his long journey of recovering. She’s concerned about the quality of his care during the wee hours of the night because he’s complained about the nurses. His children are being very supportive. We keep praying that they all find spiritual guidance during this difficult time.
Do any of you know or have heard of this dual-diagnosis? Thank you.
AnonymousDecember 28, 2006 at 10:49 pm
I had to look ADEM up on the web, this is what I found … Im sure this is what he has been diagnosed with, please confirm that I got the right description of ADEM, I just wanted to put it into the thread so some of the others Know what ADEM is ….
[B]What is Acute Disseminated Encephalomyelitis?[/B]
Acute disseminated encephalomyelitis (ADEM) is characterized by a brief but intense attack of inflammation in the brain and spinal cord that damages myelin – the protective covering of nerve fibers. It often follows viral infection, or less often, vaccination for measles, mumps, or rubella. The symptoms of ADEM come on quickly, beginning with encephalitis-like symptoms such as fever, fatigue, headache, nausea and vomiting, and in severe cases, seizures and coma. It may also damage white matter (brain tissue that takes its name from the white color of myelin), leading to neurological symptoms such as visual loss (due to inflammation of the optic nerve) in one or both eyes, weakness even to the point of paralysis, and difficulty coordinating voluntary muscle movements (such as those used in walking). ADEM is sometimes misdiagnosed as a severe first attack of multiple sclerosis (MS), since some of the symptoms of the two disorders, particularly those caused by white matter injury, may be similar. However, ADEM usually has symptoms of encephalitis (such as fever or coma), as well as symptoms of myelin damage (visual loss, paralysis), as opposed to MS, which doesn’t have encephalitis symptoms. In addition, ADEM usually consists of a single episode or attack, while MS features many attacks over the course of time. Doctors will often use imaging techniques, such as MRI (magnetic resonance imaging), to search for old and new lesions (areas of damage) on the brain. Old “inactive” brain lesions on MRI suggest that the condition may be MS rather than ADEM, since MS often causes brain lesions before symptoms become obvious. In rare situations, brain biopsy may show findings that allow differentiation between ADEM and severe, acute forms of MS. Children are more likely than adults to have ADEM.
Are his doc’s familiar with both GBS and ADEM?[/B]
AnonymousDecember 29, 2006 at 7:43 am
Yes – that is what they say he has. I don’t think she’s (my sister) talked to the doctors. His children (they are in their 30’s) are giving information out to his other family members and friends. His daughter works as a physical therapist at the same hospital rehab where he is, knows the doctors, so I’m sure she’s looking out for her father. thanks
AnonymousDecember 29, 2006 at 12:46 pm
If your sister’s boyfriend is not getting good care in the hospital during the night, she might try something that I found effective when memers of my own family have been hospitalized.
First, if it’s possible, it’s a good idea to have a family member or friend check on him during the night, or even better, stay there with him. Some hospitals are willing to provide a lounge chair for visitors, and it’s possible to sleep on these (I’ve done this myself).
If nobody is available to be there during the night, she can find out when the nursing shifts change. Shortly after each shift change, call the nurses station, find out the name of the nurse and aide, in charge of his care for that shift. Ask to speak to her/him, introduce herself, and request an update on his status right then. When was he last turned? Has he been to the bathroom recently? When did he get his medications? Is he sleeping? You get the idea.
Tell the nurse you will be calling back in a couple of hours to check again, and will ask for her/him. Then do it. Yes, it means setting the clock and waking up to call every few hours during the night, but I found that it lets the nurses know that someone is looking out for him, and is aware of who is supposed to be providing his care, and when.
During the day, she can find out what the schedule for therapy, doctors visits, tests, meals, personal hygene care etc. should be. If things don’t happen, find out why and request that they be done.
If your sister or her boyfriend have a problem with his care regarding any particular nurse or aide, make a complaint to the head nurse. This can be done in a firm and fair manner. Angry confrontation is not usually the best approach. Sometimes it takes persistent pressure, but when your requests are reasonable, you can prevail. Usually once they see that you won’t just give up, they often find that doing the job is easier than listening to complaints.
I don’t mean to give the impression that all health care personnel are bad or don’t do their jobs. There are many wonderful care givers, and many who are overworked. The problems come from the few who don’t do their jobs with care and sincerity.
Anyway, I know this a lot to do, but hospitals can be very dangerous and uncomfortable places – many of our forum members can tell you how it feels to be helpless and getting poor care.
Best wishes for your sister’s boyfriend to be out of the hospital soon.
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