Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 Boy can I identify with these problems. Been there, done that. Still doing some of that. Rant and Rave. It gets it out of the system. sees a primary care doctor, a neurologist and a psychiatrist. She sees the latter two once a month; sometimes the neurologist more often. For each visit I take a list of the medications she takes with the additions since last visit highlighted. I also take a summary of all events since last visit and a note of prescriptions needed. We have been to the ER so many times (I think they change doctors there monthly.) I have an admissions notebook with all relevant medical information inside, copies of insurance cards, doctors names and phone numbers, etc. In this day of computers why hospitals can't keep medical history information in the file I have no clue. When they ask me to list the number of times she has been in the hospital and why she was there I have to bite my lip to keep from laughing. I thumb to the tab and take out the list of the more than 30 times she has been in the hospital. I must say since we made the admissions book (It was suggested in one of the UMDF Newsletters.) we have had less trouble. Also Dr. Soueidan, 's neurologist, wrote up a protocol for what he wants done when we show up. That has been a real blessing. Lots of you have made other really good suggestions that I plan to use to improve 's admissions book. Do any of you run across the hospital not having things like CoQ10, alpha lipoic acid, and Carnitor in their formulary. We have to take her meds when we go to the hospital, the pharmacist checks them and we have to give them to her. can only take the brand name Ativan. For some reason the generic Lorazapam does not work. Has anyone run across this problem? Are any of your kids sensitive to red food dye? When was little one red lollipop would send her " in orbit " for hours. She would get so tired she would sob before she could settle down. We have not run the experriment since she grew up. One other thing I might mention. is losing her cognitive ability. When she was still considered competent she gave us her power of attorney and she also made a living will. These documents have been especially beneficial since she is an adult who is not considered capable of making her own decisions now. I am so glad I joined these groups. You have been most helpful and informative. Thanks a bunch for all your good ideas. I have added you as a group to my prayer list. It seems all of us have some issue or another with this frustrating and mysterious disease. Take care, Shelby, mother of , 30 years, mitochondrial encephalopathy, clinically diagnosed in 1998 by Dr. Kelley, Kennedy Krieger; also organizer of Virginia support group > , , > > > Hey girl If I could I would hug you! Your rant was my exact > rant for many years before we got onto the correct path and even then > it still happens. My oldest is a CVs controlled, Migraine queen, Nuro > Vascular Screamer, MIDS Maternally Inherited Dysautonomia > Mitochondrial Myopathy patient. And by the way Yes you are the expert > in the room unfortunately who is paying them for your knowledge most > of the time! I hear you on the frustration for sure. I have told ER > docs how ironic it is that I am standing here telling you what to do > for my child and you will have the nerve to turn around and bill me > for my knowledge that will save my kids life. I think there is > something wrong with this picture!!!!! They just look at you like you > are insane of course! The telling the story thing over and over and > over again in the same hospital is just insane. That too frustrates > me. In this day and age! with computers you would think they could > read that in their histories on the computer! Hang in there girl!!!! > You are not alone in your Rant! In fact very well understood!!!!! > > > > HUGS! > O and crew - Kira,, and Krisalynn Mitochondrial > Myopathy-MIDS Maternally Inherited Dysautonomia- NVD ( Nuro Vascular > Dystrophy) and dad Enrique > Visit our web page: WWW. caringbridge.org/ca/mitooggo > > Help support my sister in her new business at : Come and see > what's NEW! http://www.youravon.com/elleenmiller Your AVON > representative (Sign in passcode: ElleensAVON if you are signing in > for the first time :-) > > > > > Please contact mito-owner with any problems or > questions. > > > > > Quote Link to comment Share on other sites More sharing options...
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