Guest guest Posted November 12, 2005 Report Share Posted November 12, 2005 , I know there used to be a man that worked at the NIH that had a family member with mito, but even his name escapes me at the moment. I believe the funding for his research ran out, so I don't know that he would even still be there.. Has Bonnie had any testing for mito at this point? If not, I would recommend getting her records together, (copies only) and send them to one of the few mito docs in the country. Have the docs in Phoenix consulted with any of the mito docs around the country regarding Bonnie? Is she on any of the mito cocktail at all? Sorry for so many questions, but I am just trying to get a better feel of where your family is at in your search for answers. Marie Codier wrote: >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) > > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2005 Report Share Posted November 12, 2005 My son and I made 6 trips to the NIH in 1985-86. They set up a study for our family under NINDS (National Institute of Neurological Disorders and Stroke). The only person we saw who is still there is Marinos Dalakas, MD, director of the neuromuscular division of NINDS. http://intra.ninds.nih.gov/Lab.asp?Org_ID=111 Barbara > > 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...
Guest guest Posted November 13, 2005 Report Share Posted November 13, 2005 , Do you mean Steve Zullo? He is still at NIH and still doing Mito Research, but not with a patient population. Gropman is a Pediatric Neurologist who sees patients at NIH and also practices at town and Children's DC. She has been our expert guest at Mito chat a few times. I know she has seen a few adult Mito patients, but I'm not sure of her current status. Her contact information is available on the UMDF website. Kristie _____ From: [mailto: ] On Behalf Of dgregori Sent: Saturday, November 12, 2005 3:53 PM To: Subject: Re: N.I.H. , I know there used to be a man that worked at the NIH that had a family member with mito, but even his name escapes me at the moment. I believe the funding for his research ran out, so I don't know that he would even still be there.. Has Bonnie had any testing for mito at this point? If not, I would recommend getting her records together, (copies only) and send them to one of the few mito docs in the country. Have the docs in Phoenix consulted with any of the mito docs around the country regarding Bonnie? Is she on any of the mito cocktail at all? Sorry for so many questions, but I am just trying to get a better feel of where your family is at in your search for answers. Marie Codier wrote: >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) > > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2005 Report Share Posted November 13, 2005 Kristie, Yep, Steve is who I meant but couldn't think of. Thanks for remembering for me. :-) How are things going with you? Kristie Palmer wrote: >, > > > >Do you mean Steve Zullo? He is still at NIH and still doing Mito Research, >but not with a patient population. Gropman is a Pediatric >Neurologist who sees patients at NIH and also practices at town and >Children's DC. She has been our expert guest at Mito chat a few times. I >know she has seen a few adult Mito patients, but I'm not sure of her current >status. Her contact information is available on the UMDF website. > > > >Kristie > > > > _____ > >From: [mailto: ] On Behalf >Of dgregori >Sent: Saturday, November 12, 2005 3:53 PM >To: >Subject: Re: N.I.H. > > > >, > >I know there used to be a man that worked at the NIH that had a family >member with mito, but even his name escapes me at the moment. I believe >the funding for his research ran out, so I don't know that he would even >still be there.. Has Bonnie had any testing for mito at this point? If >not, I would recommend getting her records together, (copies only) and >send them to one of the few mito docs in the country. Have the docs in >Phoenix consulted with any of the mito docs around the country regarding >Bonnie? Is she on any of the mito cocktail at all? Sorry for so many >questions, but I am just trying to get a better feel of where your >family is at in your search for answers. > > > > Marie Codier wrote: > > > >>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) >> >> >> >> >>Medical advice, information, opinions, data and statements contained herein >> >> >are not necessarily those of the list moderators. The author of this e mail >is entirely responsible for its content. List members are reminded of their >responsibility to evaluate the content of the postings and consult with >their physicians regarding changes in their own treatment. > > >>Personal attacks are not permitted on the list and anyone who sends one is >> >> >automatically moderated or removed depending on the severity of the attack. > > >> Quote Link to comment Share on other sites More sharing options...
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