Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Thanks for sharing Kenya. How old is your son? Does he notice a difference? 2 years is a pretty long time-he's had no problems with the side effects? What about weight gain? I saw that listed and surely don't need that one!! Kenya Birkle <smamom2three@...> wrote: this is the drug that is being used along with carnitor in one of hte clinical drug trails that are going on. My son is on it and has been for 2 years now. hugs kenya Joy wrote: Hi all- I've never seen a neuro in my adult years, but since lately I feel like sma has been progressing I thought it might be a good idea. I've contacted the people to see the only one in the area. It takes about 3 months to get in. To make a long story short, I just got on e-mail from him asking me if I would be willing to start taking Depakote before coming to see him. This kind of took me by surprise as I have no idea what it is, or why he could suggest it without ever seeing me. Can any of you share your experiences of this? Do any of you take this? I will look into what it is more when I get home. (yes I am bad and typing this from work). I just wanted to know some info from other SMAers who know what it's all about. Thank you. --------------------------------- Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 Aschdon is now 6 will be 7 in may. yes we have seen wonderful wonderful positive results from this. So good that he is done with the trail but they wanted to keep him on the med. He has gone from not being able to lift even 2 oz to being able to lift a good 10 ounces. When sitting on the couch if he falls over he can push himself back up if he fell onto the arm rest. lately he has actually lifted his head twice when he was on his side. Not for a long period of time but for a child that never ever did it before it is a huge huge exciting thing for us. he did gain weight but with Aschdon he has other issues as well. He was a premie on top of having SMA. But the weight he gained was healthy, it has helped him get to the healthy point. he has not gained extra unneeded weight from it. we have had no side effects except at the begining. He is one of the main reasons the depakote is not given with out the carnitor as well because his level went to zereo so he contributed greatly to the research. He did get weaker when his level was nothing (long story, not the trail fault fo rnot knowing our hospital) but as soon as he started on the carnitor he gained what he had lost. i would be very willing to talk to you more about this. It has proven not just from what we have seen but in the MUNE test that he has had done in the trail that it is working. Kenya Joy <j0yeuxx@...> wrote: Thanks for sharing Kenya. How old is your son? Does he notice a difference? 2 years is a pretty long time-he's had no problems with the side effects? What about weight gain? I saw that listed and surely don't need that one!! Kenya Birkle <smamom2three@...> wrote: this is the drug that is being used along with carnitor in one of hte clinical drug trails that are going on. My son is on it and has been for 2 years now. hugs kenya Joy wrote: Hi all- I've never seen a neuro in my adult years, but since lately I feel like sma has been progressing I thought it might be a good idea. I've contacted the people to see the only one in the area. It takes about 3 months to get in. To make a long story short, I just got on e-mail from him asking me if I would be willing to start taking Depakote before coming to see him. This kind of took me by surprise as I have no idea what it is, or why he could suggest it without ever seeing me. Can any of you share your experiences of this? Do any of you take this? I will look into what it is more when I get home. (yes I am bad and typing this from work). I just wanted to know some info from other SMAers who know what it's all about. Thank you. --------------------------------- Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 What is carnitor? Lori Kenya Birkle wrote: > Aschdon is now 6 will be 7 in may. yes we have seen wonderful > wonderful positive results from this. So good that he is done with the > trail but they wanted to keep him on the med. He has gone from not > being able to lift even 2 oz to being able to lift a good 10 ounces. > When sitting on the couch if he falls over he can push himself back up > if he fell onto the arm rest. lately he has actually lifted his head > twice when he was on his side. Not for a long period of time but for a > child that never ever did it before it is a huge huge exciting thing > for us. he did gain weight but with Aschdon he has other issues as > well. He was a premie on top of having SMA. But the weight he gained > was healthy, it has helped him get to the healthy point. he has not > gained extra unneeded weight from it. we have had no side effects > except at the begining. He is one of the main reasons the depakote is > not given with out the carnitor as well because his level went to > zereo so he contributed greatly research. He did get weaker when his > level was nothing (long story, not the trail fault fo rnot knowing our > hospital) but as soon as he started on the carnitor he gained what he > had lost. > > i would be very willing to talk to you more about this. It has > proven not just from what we have seen but in the MUNE test that he > has had done in the trail that it is working. > > Kenya Quote Link to comment Share on other sites More sharing options...
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