Guest guest Posted November 12, 2005 Report Share Posted November 12, 2005 Hi, I wrote before, explaining the situation with my daughter Bonnie (she's been in the hospital for the past 11 months). Her doctors are wanting to send her to N.I.H. and we were wondering if anybody on this list has heard of any mito doctors there? We are currently researching possible studies for which she would qualify, such as Guittleman's (potassium and magnesium wasting disease) or chronic bacteremia problems. She also has gastroperesis, colonic dysmotility, myasthenia syndrome (this is what they are calling her muscle weakness and ptosis problems), phrenic nerve damage (from her open-heart surgery in July), chronic anemia (but doing much better with Procrit), low immunity (IVIG every 3 weeks), and of course she is still battling the pain from long-term infection (fevers were up to 105.8) and rigors. At the worst of it (right after her sternotomy/thymectomy) she was taking 22 mg. of Dilaudid every hour. She is down to 4 mg every hour, but every time she gets bacteremic, she gets debilitating pain in her spine and neck. Has anyone been to N.I.H.? Are there any mito experts there?...... Thanks, Lyn Bonnie's Mummy (http://www2.caringbridge.org/az/bonniemarie/index.htm) Quote Link to comment Share on other sites More sharing options...
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