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I thank you for your response. My brother is back at the hospital (third time this week) after losing consciousness at home from just raising his head in bed. His blood pressure would go up to 210/100 and then plummet to 30/10. This happens from just the little decrease in clonidine from 6mgs every 4 hours to 5mgs to every 4 hours. He was admitted and the doctor is insisting on further decreasing the clonidine, when my brother was informed of this knowing how it would increase the tremors, he became combative pulling the tubes out and trying to get out of bed which had him going into such severe tremors that lasted hours.

My other brother stayed the entire night with him and said that they further decreased the clonidine to 4mgs every 4 hours and the doctor is insisting on getting him off the med saying that the tremors won't kill him but their effect on the kidneys will. It was a along night with the tremors being the worst they had ever been requiring 6 staff members to assist in keepig my brother safe from falling out of bed. My brother described it as almost being like watching somebody going through a detox....the tremors went on all night long and fierce followed by periods of apnea but they have calmed down somewhat and are not as strong and shorter in duration so we are hoping that the doctor's plan to further decrease his meds will help his kidney function and not leave him incapacitated by tremors. Seems that the last update I received showed that the urine ouput has increased and that the tremors are more manageable.

The doctor is thinking of adding florinef and primidone as he tapers off the clonidine.

As far as tests I know an MRI, CAT Scans, lumbar puncture, urine and blood work for catecholamines were done. Not too sure about the blood tests for infectious diseases but since he has had almost everything under the sun done I would assume they did do that. He had the EMG and went down to John Hopkins to have a skin graft test that showed definite nerve damage in the periperhral sense. I have forewarded your post to my other brother to run past the doctor to see if there is anything he feels my brother should further have done.

I think my brother and our family have resolved our selves to the fact that this is something that just isn't going to get better and that we just want to get my brother to the best quality of life even if it means having whatever needs to be done within his home or at least have scheduled appointments for treatments rather than having to go through the ER process each time he runs into trouble. At least this time the doctor called ahead and had the Er ready to admit him. Seems that when my brother cannot urinate or produce urine that an IV will get things going so it would be nice if the doctors would come up with something to take care of that within the home.

Again I thank you for your response and if anybody else knows of anything that may have been overlooked or that could help my brother and his family out I would much appreciate it. We are hoping to see if the doctors will make arrangements for Hospice to take my brother on since his condition is so critical and there doesn't seem to be anything to offer us any hope of his condition improving......it seems to only be progressive with him further and further declining with each trip to the hospital. And it is scary and heartbreaking to see him going through this.

Thanks for the information and support ~ Goody:angel: :wave: