Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 My daughter has Complex I and Complex IV deficiency which was diagnosed by the geneticist. But does the geneticist treat the disorder or are there mito doctors? Thanks, Jessy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 My daughter sees 2 specialist, a medical genetics/metabolic specialist and neurologist. To be honest, the medical genetics are the most involved in hr care and they are the ones I turn to about mito. The neurologist only monitors her and since she has no seizures, thus far is not really involved in her care other than a visit every 6 months. My pediatrition in only my connection to getting referral to the others. Hope that helps. I know If other issues were to come up I would need other specialist like nephrology (kidneys), endocrinology(hormones) etc but so far we are not there. Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.samyahaddad.com/.org/.net Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 Who treats mito? My daughter has Complex I and Complex IV deficiency which was diagnosed by the geneticist. But does the geneticist treat the disorder or are there mito doctors? Thanks, Jessy Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 My kids have Partial Complex 1. They see the Head of Pediatric Neurology, a physiatrist, and an Orthopedist, along with our Family Practitioner. Cindy-GA RE: Who treats mito? My daughter sees 2 specialist, a medical genetics/metabolic specialist andneurologist. To be honest, the medical genetics are the most involved in hrcare and they are the ones I turn to about mito. The neurologist onlymonitors her and since she has no seizures, thus far is not really involvedin her care other than a visit every 6 months. My pediatrition in only myconnection to getting referral to the others. Hope that helps. I know Ifother issues were to come up I would need other specialist like nephrology(kidneys), endocrinology(hormones) etc but so far we are not there.Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leannawith same disease.Samya's Memorial Site: www.samyahaddad.com/.org/.netEmail: Suhad1970@...Alt Email: Suhad@...AiM Chat: Suhad1970-----Original Message-----From: ******* Sent: Wednesday, March 02, 2005 11:57 AMTo: Mito Subject: Who treats mito?My daughter has Complex I and Complex IV deficiency which was diagnosed by the geneticist. But does the geneticist treat the disorder or are there mito doctors? Thanks,JessyPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Hi Jessy, I am not familiar with the role of the geneticist, but there are doctors who specialize in mitochondrial disease. The big problem is that they are few and far between, and the best of them are now available only for diagnosing because they are so swamped. If you can find a really good neurologist, that is humble and willing to learn, you can work together with him or her. The United Mitochondrial Disease foundation has a list of doctors other people have recommended. That's how we found ours. If you can attend the UMDF conferences you will be able to hear from top doctors in the field and to share what you learn with your daughter's doctor. My son's neurologist gladly accepted a book I brought home from the conference written for physicians about mito. That's the kind of person you need on your team. You'll need a really good pediatrician or family doctor that is willing to learn as well, and any other specialists for the specific problems your daughter has. In the end, what you learn from the other parents on this board and through your own research may be the best source of help you have. God bless! Donna Mom to Craig (age 8 with unspecified mito) and Dalton (age 6 with possible mito but doing well) Who treats mito? My daughter has Complex I and Complex IV deficiency which was diagnosed by the geneticist. But does the geneticist treat the disorder or are there mito doctors? Thanks,JessyPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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