The Dysautonomia Center welcomes guest writer Alyson Brenner who shares her story on the journey to reduce sedative medications for her son with FD. Alyson offers practical advice to families and the path to possible.
Twenty seven years ago—the diagnosis—Familial Dysautonomia. It didn’t even sound like English. And everything changed. We endured years of doctors’ visits, tube feeds, surgeries, medications and crises. I learned how to manage the day-to-day maintenance. I dealt with the emergencies, and I knew how to medicate when a crisis occurred. But managing all of the medications was difficult—we had so many questions. Did Michael really need all of these meds? Did increasing the dosages year after year help him? Were there other options?
Finally, after many years of adding more and more medications to his regimen, we were directed to start decreasing some of them. First to go were the benzodiazepines—a class of medications that work on the central nervous system. They reduce the activity of nerve cells within the brain. Michael was so heavily drugged from these medications, and new options were being explored for FD, so we took the plunge to reduce and ultimately discontinue them. In my role as chief maintenance specialist, I began the task of reducing the meds—the Valium (diazepam), the Klonopin (clonazepam), and then the Catapres (clonidine, not a benzo) in a very slow, controlled process—all with direction from Dr. Kaufmann and Christy Spalink at the Center. Their support and guidance was unwavering. I never told Michael when I cut back on a dose. I reduced the meds by one quarter of a pill (and in the beginning, I even went as small as one eighth of a pill) and only cut back one medication, one dose at a time.
“Applying what the experts have learned has changed my son’s life for the better” – Alyson Brenner, mother of Michael (age 29)
I waited a month before making another very slow change. I never saw any negative reaction when I made a reduction, and this was very encouraging. It showed me that the high doses of these meds were not necessary. It did take several years, but Michael is now totally free of valium, klonopin, and clonidine. He is now taking carbidopa to control his blood pressures—a much safer option than the other meds he was taking, and he is a changed young man. He is awake, more engaged, and very happy. He notices the difference!
Then there’s the issue of the BIPAP for sleep. Michael’s CO2 levels were dangerously elevated. He began using the BIPAP several years ago and those numbers normalized very quickly. Does he like using it? Absolutely not. But the research clearly shows what can and has happened to patients who do not use this little machine. As parents, we offered our son no choice in the decision to use the BIPAP. So yes, Michael will complain about it, but he understands why he uses it and he complies. It’s a very simple solution, and I see it as a necessity.
There have been a lot of exciting advances in the research and treatment of FD in the last few years. Applying what the experts have learned has changed my son’s life for the better. The direction is available and I urge everyone to take advantage of the wonderful knowledge and expertise that the Center offers. They are there to help.
Guest writer Alyson Brenner contributed her story to show other families that it is possible to reduce the use of sedative medications in patients with FD. The Center has a specialist medical team available to support families living with FD.