Guest guest Posted September 26, 2006 Report Share Posted September 26, 2006 Hello I have my son on Vit E and sadly it has not helped him. The thing that has helped him in the past is Pro EFA capsules. I noticed when I switched him to liquid he did not progress so I thought the Vit E would be it since it is not in the oil. Well it doesn't so I think I will put him back on the ProEfa. I have an unopened bottle of oil (I think it is the 3-6-9 formula I will double check) for sale I will accept best offer since I am changing him. It is such a bummer. My son has hypotonia and loose joints too. Is thier anyone else out there that the vitamin E is not helping? This is a truly trial and error measure. When he gets on the Proefa I notice for about 2 weeks great surges then nothing he doesn't have anymore. If I take him off it then put him back on I notice surges again. What does anyone make of that? THANK YOU Angel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 I don't know about the vitamin E, since I haven't tried it, but our Dan Doctor told us to start on Co-Q10 for our son's Hyptonia, its suppose to give the cells in their bodies " new Life " energy.. have you tried that? good luck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 YES he has been on coenzyme Q 10 for a long time and yes it does help for energy he actually had his blood tested and it was low but now it is normal with supplementation. He is also on prescription carnitor too. Re: [ ] vit E not working I don't know about the vitamin E, since I haven't tried it, but our Dan Doctor told us to start on Co-Q10 for our son's Hyptonia, its suppose to give the cells in their bodies " new Life " energy.. have you tried that? good luck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Did you take him off the omega 3 prior to starting the vitamin E? If so, why? And how long did you keep him on vit E? I would suggest using both (which is what I'm doing). It will take some time to reverse an omega deficiency with just vitamin E, and the omega 3 gets oxidized with low vit E. So supplementing both will probably work best in the kids who respond. Also if he has low tone and apraxia he should have carnitine checked. It seems like more than just a handful of apraxic kids are turning out as having low carnitine levels - though we don't know yet why that is. But its treatable, and may improve tone if carnitine is low. -claudia > Hello > I have my son on Vit E and sadly it has not helped him. The thing that has helped him in the past is Pro EFA capsules. I noticed when I switched him to liquid he did not progress so I thought the Vit E would be it since it is not in the oil. Well it doesn't so I think I will put him back on the ProEfa. I have an unopened bottle of oil (I think it is the 3-6-9 formula I will double check) for sale I will accept best offer since I am changing him. It is such a bummer. My son has hypotonia and loose joints too. Is thier anyone else out there that the vitamin E is not helping? This is a truly trial and error measure. > When he gets on the Proefa I notice for about 2 weeks great surges then nothing he doesn't have anymore. If I take him off it then put him back on I notice surges again. What does anyone make of that? > THANK YOU > Angel > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 YES he has been on coenzyme Q 10 for a long time and yes it does help for energy he actually had his blood tested and it was low but now it is normal with supplementation. He is also on prescription carnitor too. Re: [ ] vit E not working I don't know about the vitamin E, since I haven't tried it, but our Dan Doctor told us to start on Co-Q10 for our son's Hyptonia, its suppose to give the cells in their bodies " new Life " energy.. have you tried that? good luck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 I had him on the omegas and vitamin E at the same time. I didn't take him off of the omega. He does take carnitor for years (his blood was checked and they continue to check it) he has very low tone but it is improving never regressing. He has been on vitamin E for over a month and i didn't notice anything. If you think it will still benefit him and keep him on it I will it definetely will not hurt him My son probably has some sort of neurological disorder but Mayo cannot tell me what? Very frusterating. He can now walk and run but he is very guarded. Angel [ ] Re: vit E not working Did you take him off the omega 3 prior to starting the vitamin E? If so, why? And how long did you keep him on vit E? I would suggest using both (which is what I'm doing). It will take some time to reverse an omega deficiency with just vitamin E, and the omega 3 gets oxidized with low vit E. So supplementing both will probably work best in the kids who respond. Also if he has low tone and apraxia he should have carnitine checked. It seems like more than just a handful of apraxic kids are turning out as having low carnitine levels - though we don't know yet why that is. But its treatable, and may improve tone if carnitine is low. -claudia > Hello > I have my son on Vit E and sadly it has not helped him. The thing that has helped him in the past is Pro EFA capsules. I noticed when I switched him to liquid he did not progress so I thought the Vit E would be it since it is not in the oil. Well it doesn't so I think I will put him back on the ProEfa. I have an unopened bottle of oil (I think it is the 3-6-9 formula I will double check) for sale I will accept best offer since I am changing him. It is such a bummer. My son has hypotonia and loose joints too. Is thier anyone else out there that the vitamin E is not helping? This is a truly trial and error measure. > When he gets on the Proefa I notice for about 2 weeks great surges then nothing he doesn't have anymore. If I take him off it then put him back on I notice surges again. What does anyone make of that? > THANK YOU > Angel > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Hi, I just wanted to let you know we never got the WOW surges others have gotten.. BUT we got nice steady progress. I can see it when I forget to give my son his Pro-Efa. I'm now giving him Vit E and again seeing subtle changes. I think if I stopped it I would than see him regress again. It doesn't have to be WOW surges as long as it's nice steady progress. I would also give both the Vit. E and Pro-Efa a try at the same time. Like I said that's what were doing and it's helping! Amy D. & Angel Millman <drizzt@...> wrote: Hello I have my son on Vit E and sadly it has not helped him. The thing that has helped him in the past is Pro EFA capsules. I noticed when I switched him to liquid he did not progress so I thought the Vit E would be it since it is not in the oil. Well it doesn't so I think I will put him back on the ProEfa. I have an unopened bottle of oil (I think it is the 3-6-9 formula I will double check) for sale I will accept best offer since I am changing him. It is such a bummer. My son has hypotonia and loose joints too. Is thier anyone else out there that the vitamin E is not helping? This is a truly trial and error measure. When he gets on the Proefa I notice for about 2 weeks great surges then nothing he doesn't have anymore. If I take him off it then put him back on I notice surges again. What does anyone make of that? THANK YOU Angel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Did you take him off the omega 3 prior to starting the vitamin E? If so, why? And how long did you keep him on vit E? I would suggest using both (which is what I'm doing). It will take some time to reverse an omega deficiency with just vitamin E, and the omega 3 gets oxidized with low vit E. So supplementing both will probably work best in the kids who respond. Also if he has low tone and apraxia he should have carnitine checked. It seems like more than just a handful of apraxic kids are turning out as having low carnitine levels - though we don't know yet why that is. But its treatable, and may improve tone if carnitine is low. -claudia > Hello > I have my son on Vit E and sadly it has not helped him. The thing that has helped him in the past is Pro EFA capsules. I noticed when I switched him to liquid he did not progress so I thought the Vit E would be it since it is not in the oil. Well it doesn't so I think I will put him back on the ProEfa. I have an unopened bottle of oil (I think it is the 3-6-9 formula I will double check) for sale I will accept best offer since I am changing him. It is such a bummer. My son has hypotonia and loose joints too. Is thier anyone else out there that the vitamin E is not helping? This is a truly trial and error measure. > When he gets on the Proefa I notice for about 2 weeks great surges then nothing he doesn't have anymore. If I take him off it then put him back on I notice surges again. What does anyone make of that? > THANK YOU > Angel > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2006 Report Share Posted September 28, 2006 I had him on the omegas and vitamin E at the same time. I didn't take him off of the omega. He does take carnitor for years (his blood was checked and they continue to check it) he has very low tone but it is improving never regressing. He has been on vitamin E for over a month and i didn't notice anything. If you think it will still benefit him and keep him on it I will it definetely will not hurt him My son probably has some sort of neurological disorder but Mayo cannot tell me what? Very frusterating. He can now walk and run but he is very guarded. Angel [ ] Re: vit E not working Did you take him off the omega 3 prior to starting the vitamin E? If so, why? And how long did you keep him on vit E? I would suggest using both (which is what I'm doing). It will take some time to reverse an omega deficiency with just vitamin E, and the omega 3 gets oxidized with low vit E. So supplementing both will probably work best in the kids who respond. Also if he has low tone and apraxia he should have carnitine checked. It seems like more than just a handful of apraxic kids are turning out as having low carnitine levels - though we don't know yet why that is. But its treatable, and may improve tone if carnitine is low. -claudia > Hello > I have my son on Vit E and sadly it has not helped him. The thing that has helped him in the past is Pro EFA capsules. I noticed when I switched him to liquid he did not progress so I thought the Vit E would be it since it is not in the oil. Well it doesn't so I think I will put him back on the ProEfa. I have an unopened bottle of oil (I think it is the 3-6-9 formula I will double check) for sale I will accept best offer since I am changing him. It is such a bummer. My son has hypotonia and loose joints too. Is thier anyone else out there that the vitamin E is not helping? This is a truly trial and error measure. > When he gets on the Proefa I notice for about 2 weeks great surges then nothing he doesn't have anymore. If I take him off it then put him back on I notice surges again. What does anyone make of that? > THANK YOU > Angel > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2006 Report Share Posted September 28, 2006 Hi, I just wanted to let you know we never got the WOW surges others have gotten.. BUT we got nice steady progress. I can see it when I forget to give my son his Pro-Efa. I'm now giving him Vit E and again seeing subtle changes. I think if I stopped it I would than see him regress again. It doesn't have to be WOW surges as long as it's nice steady progress. I would also give both the Vit. E and Pro-Efa a try at the same time. Like I said that's what were doing and it's helping! Amy D. & Angel Millman <drizzt@...> wrote: Hello I have my son on Vit E and sadly it has not helped him. The thing that has helped him in the past is Pro EFA capsules. I noticed when I switched him to liquid he did not progress so I thought the Vit E would be it since it is not in the oil. Well it doesn't so I think I will put him back on the ProEfa. I have an unopened bottle of oil (I think it is the 3-6-9 formula I will double check) for sale I will accept best offer since I am changing him. It is such a bummer. My son has hypotonia and loose joints too. Is thier anyone else out there that the vitamin E is not helping? This is a truly trial and error measure. When he gets on the Proefa I notice for about 2 weeks great surges then nothing he doesn't have anymore. If I take him off it then put him back on I notice surges again. What does anyone make of that? THANK YOU Angel Quote Link to comment Share on other sites More sharing options...
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