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Sunday, May 28, 2017
A 4-Year-Old with MG
hi, i wrote to you all back on april 2008. my son is 4 years old now and he is on mestinon only. he gets 6 doses a day from 7am to 10pm (every three hours)4 doses of 1.7ml and 2 doses of 2.0ml (60mg).he is doing fine. he has a feeding tube and gets feeding every half hour after his med. he does eat by mouth but gets tired after about 4 to 7 bites.his weight is 35lbs and is 3 feet 6 inches tall.he is going to shcool and they take great care of him there. when he turns 5 they are going to put him in a regular class but a school nurse will look after his needs.he is very smart and knows about his condition.he tells the teachers he,s tired and needs to rest on his own. he has been taking his med oraly by himself since he was 2 and a half.you just hand it to him and he gulps it down. everyone is amazed at how he takes his med.when he was on the vent at the hospital he turned 2 years old and he would point at the suction tube when he needed to be suctioned.he amazed everybody with his inteligence and his will to live.he is a very bright boy and picks up on things instantly.the best part about him is that he knows he has a problem and has accepted it.he is truly amazing. my question to you is , what new kind of research is being done for mg and is stem cell a part of the new research. is there a better future for people with mg and what new studies are being done. i also want to thank all the doctors of the world for there hard work. beacause without there hard work my son would not be here. thanks again
Research continues in myasthenia, but stem cell therapy has not been one of the major explorations in research. Stem cell therapies are best when trying to replace a cell that is absent/dying and needs to be replenished (e.g. muscle cells in muscular dystrophy, motor neurons in ALS). Autoimmune myasthenia is a disease where your own immune system is attacking the muscle-nerve connection. Autoimmune myasthenia would not be fixed with this process, but there is the idea that maybe it could help with congenital myasthenia gravis.
Bone marrow transplantation is considered a form of stem cell treatment, and has been used rarely in autoimmune myasthenia. After very aggressive chemotherapy (wiping the cell's existing immune cells out), fresh bone marrow cells are reintroduced. I consider this really just an extreme form of immunosuppression. It has been used as a treatment of highly refractory myasthenia gravis, but it has a very high potential for serious side effects and even death. The medical literature on this use of bone marrow transplant is still very short on this subject. There is an ongoing study out of Northwestern University on this subject.
Robert W Neel, IV, MD
Assistant Professor of Neurology
College of Medicine
University of Cincinnati