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Lance-Adams Syndrome aka Chronic Post Hypoxic Myoclonus
Brain & Nervous System | Last Active: 8 hours ago | Replies (16)Comment receiving replies
There has been a lot of discussion since I last visited this discussion. We have seen very little to no improvement in my 23-year-old son's condition since he was diagnosed with LAS 6 months ago. I'm now looking for specialists and an inpatient rehab facility outside of Florida for him. Although his Neurologist and Physical Therapists are great, I don't feel my son is getting the care he desperately needs. I lead discussions with his doctors and recommend medications to be added and/or removed from his plan. I'm looking for a neurologist and an IRF who has treated LAS and who can take charge of his treatment plan. I am willing to travel.
I took my son to see doctor Ramon E Bautista (mentioned by @johnbishop ) for a second opinion. He suggested weaning my son off some of the meds that are making him lethargic and keeping up with PT. Dr. Bautista had never treated a patient with LAS.
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Dr. Scott Spritzer (Mayo Clinic Eau claire wi) treats my daughter. I do believe she is his first patient he’s treated with LAS but maybe you could have a video appointment with him. The brain can take a very long time to heal. My daughter is 2 years in and some days feel like day 1 all over again. Other days she’s walking in her apartment washing dishes folding laundry…she went bowling recently. It’s a tricky condition and there isn’t a medication regimen that’s right for all. Just a lot of trial and error to find out what works. My daughter is currently on three medications. And all of her med changes are very slow. She tries to do PT at home as that is where she feels most comfortable and the least shaky. Maybe you could hire an in home provider for pt?