Heather, my daughter, is forty-three years old and has Down Syndrome.
After a long hospitalization, two years and nine mos. ago, Heather developed involuntary-movements and had t/c's due to taking a drug--Ativan, a benzodiazepine which causes more gaba-action in the brain. After 18 mos., during which she developed involuntary-movements, had several t/c's, lost the ability to walk without assistance, to speak, and basically went from a being high-functioning person to full-care, it was finally discovered that the Ativan had caused the problems. She was given the prescription for Ativan as she was leaving the hospital after the long stay for pneumonia. When I asked what it was for, the doctor said that because she had been away from home for such a long time, if she had trouble sleeping to give her one of the "little anti-anxiety pills." On the third day after returning home, she developed gas pains and had trouble sleeping and I gave her one of the pills. The next night she had trouble sleeping, and I again gave her one of the pills. The third day after taking the first pill, she had an involuntary movement. She had never in her entire life had even a tremor. I phoned her primary care doctor and she said to give her more of the Ativan, that it was used to treat involuntary movements.
Months later, when it was discovered that the Ativan had caused the movements, she was slowly withdrawn and all involuntary movement eventually left. She regained her confidence that she would not 'jerk' and fall if she stood without holding onto someone and she began to walk again without assistance. She began to regain all functions she had lost due to the Ativan.
Unfortunately, in May she developed a uti and was given a drug that contained sulfa. She had an anaphylactic reaction and was a code-blue with anaphylactic pneumonia, was on a ventilator for 12 days and was given many fluroquinelone antibiotics. They interfered with her CNS and the involuntary movements returned. Four months later they are still with us, though not as frequent. The cessation of involuntary movements she had due to the Ativan was predictable. In almost all cases benzodiazpine-induced movements and seizures cease when the drug is withdrawn. However, from reading, I am not certain these fluoroquinelone-induced movements ever will stop. I will appreciate any knowledge anyone would care to share regarding situations similar to our daughter's. I am particularly fearful of SUDEP, since she is a heart patient. She does not take AED's, since both neurologists, one here in our hometown, and another who saw her at Vanderbilt said that she does not have E and that AED's can do more damage than good if given for undiagnosed E. I will appreciate any information anyone will share.
Thanks,
Marlene
After a long hospitalization, two years and nine mos. ago, Heather developed involuntary-movements and had t/c's due to taking a drug--Ativan, a benzodiazepine which causes more gaba-action in the brain. After 18 mos., during which she developed involuntary-movements, had several t/c's, lost the ability to walk without assistance, to speak, and basically went from a being high-functioning person to full-care, it was finally discovered that the Ativan had caused the problems. She was given the prescription for Ativan as she was leaving the hospital after the long stay for pneumonia. When I asked what it was for, the doctor said that because she had been away from home for such a long time, if she had trouble sleeping to give her one of the "little anti-anxiety pills." On the third day after returning home, she developed gas pains and had trouble sleeping and I gave her one of the pills. The next night she had trouble sleeping, and I again gave her one of the pills. The third day after taking the first pill, she had an involuntary movement. She had never in her entire life had even a tremor. I phoned her primary care doctor and she said to give her more of the Ativan, that it was used to treat involuntary movements.
Months later, when it was discovered that the Ativan had caused the movements, she was slowly withdrawn and all involuntary movement eventually left. She regained her confidence that she would not 'jerk' and fall if she stood without holding onto someone and she began to walk again without assistance. She began to regain all functions she had lost due to the Ativan.
Unfortunately, in May she developed a uti and was given a drug that contained sulfa. She had an anaphylactic reaction and was a code-blue with anaphylactic pneumonia, was on a ventilator for 12 days and was given many fluroquinelone antibiotics. They interfered with her CNS and the involuntary movements returned. Four months later they are still with us, though not as frequent. The cessation of involuntary movements she had due to the Ativan was predictable. In almost all cases benzodiazpine-induced movements and seizures cease when the drug is withdrawn. However, from reading, I am not certain these fluoroquinelone-induced movements ever will stop. I will appreciate any knowledge anyone would care to share regarding situations similar to our daughter's. I am particularly fearful of SUDEP, since she is a heart patient. She does not take AED's, since both neurologists, one here in our hometown, and another who saw her at Vanderbilt said that she does not have E and that AED's can do more damage than good if given for undiagnosed E. I will appreciate any information anyone will share.
Thanks,
Marlene
