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Originally Posted by loretta
I'm so sorry your daughter has this terrible disorder. I'm a Mom with it, including the internal area and full body. What kind of treatment is she getting. I'm fully mobile thru physical therapy, massage therapy and swimming with exception of one hand- 50% frozen like a claw-delayed diagnosis and treatment. I have a wonderful neuro, psych, and pharmacologist call him my 3 in 1 doc. I'm thinking of HBOT treatment. He just built two clinics with them. Arizona Lots of wonderful informative, caring friends here. Please let us know how we can help. One of your new friends, loretta
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Kate is 22. She has 3 inch lesions all over her skin, and is barely mobile. her right leg is almost fully shut down. She cannot eat and we are lucky to get the drinks in her. Her Gastro Paresis has caused bezoirs in her stomach and they intern caused a fungle infection in her GI tract. She is becommimg incontinent as well and is actively bleeding from her kidneys. She is on the normal meds Neurontin, Kalonopin, Trazadone, Morphine ER as well as Percocet as needed. she in on a water pill, Cardio meds for rapid heart and some GI meds. All the docs around here dont know waht else to do. Her doc here got in touch with Schwartzman who advised that nerve blocks etc at this point will do nothing. I thin they are discussing the 4hour/3 day Ketamine. but of course who knows when that will happen. Prayers!!