Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 Ok, Im not really " patiently " waiting. I had Abby's lab work done yesterday, and I'm so excited (and curious) to know the results of her Vit ADEK test. I haven't started any vit supplements yet-I wanted to know her baseline first. I'm going to give her the E regardless of the results, just to see if there is a noticable difference in her. Dawn in NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 OK - I have not been able to receive any email from this site for days. Hope the problem is now solved. The problem with the ADEK levels (although I think they need to be checked, along with carnitine, is that the blood levels may not reflect what is in the brain or periferal nerves - where there may actually be a deficiency or problem with transport into the cells. I just spent some time talking to a vitamin E expert - who is fascinated by this story - and she felt that watching clinical benefits is more important than following the actual levels. If enough people get levels and find that they are normal, yet the child improves on vit E - then at some point we might be able to say - just supplement...getting levels doesn't change anything. At the same time, if it turns out that multiple vitamin deficiencies ARE identified, then this may be something to follow. Friends of mine have an apraxic/PDD child responding to fishoil/vit E combo - who turns out has low vitamin D and what sounds like mild rickets!! He also has a positive antibody to gliadin (gluten sensitivity), and will hopefully benefit from going gluten free. There is so much we don't know. My son is being tested by our ST using Kaufman - she has been blown away by the change in the last month (she was on vacation, so this all happened WITHOUT speech therapy). On the lower levels he had scored <3 percentile, a few months later he is sailing through. But on the higher levels of testing, signs of apraxia are still showing up. It makes sense that this will take time to resolve. But my son is still a different kid, and on the playground and in daily life, I am starting to forget he is/was apraxic. Maybe gone from severe to mild? I expect that things will keep improving with time, but this is really an unbelievable discovery. Anything that helps is welcome...especially if it is safe. I have gotten reassurance from the vit E experts that supplements with E are safe. Giving 400 -800 IU a day of alpha-d- tocophorol is safe. For those out there seeing surges on 400 IU, you can safely give this twice a day, and observe. I hope everyone keeps posting results - either positive or negative experiences. This may really help our kids. - > Ok, Im not really " patiently " waiting. I had Abby's lab work done > yesterday, and I'm so excited (and curious) to know the results of her > Vit ADEK test. I haven't started any vit supplements yet-I wanted to > know her baseline first. I'm going to give her the E regardless of the > results, just to see if there is a noticable difference in her. > > Dawn in NJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 ...when you say that the carnitine should be checked....should it be the full acyl profile or just the carnitine? Thanks! Sandy > OK - I have not been able to receive any email from this site for > days. Hope the problem is now solved. > > The problem with the ADEK levels (although I think they need to be > checked, along with carnitine, is that the blood levels may not > reflect what is in the brain or periferal nerves - where there may > actually be a deficiency or problem with transport into the cells. I > just spent some time talking to a vitamin E expert - who is fascinated > by this story - and she felt that watching clinical benefits is more > important than following the actual levels. If enough people get > levels and find that they are normal, yet the child improves on vit E - > then at some point we might be able to say - just > supplement...getting levels doesn't change anything. At the same time, > if it turns out that multiple vitamin deficiencies ARE identified, > then this may be something to follow. Friends of mine have an > apraxic/PDD child responding to fishoil/vit E combo - who turns out > has low vitamin D and what sounds like mild rickets!! He also has a > positive antibody to gliadin (gluten sensitivity), and will hopefully > benefit from going gluten free. There is so much we don't know. > > My son is being tested by our ST using Kaufman - she has been blown > away by the change in the last month (she was on vacation, so this all > happened WITHOUT speech therapy). On the lower levels he had scored <3 > percentile, a few months later he is sailing through. But on the > higher levels of testing, signs of apraxia are still showing up. It > makes sense that this will take time to resolve. But my son is still a > different kid, and on the playground and in daily life, I am starting > to forget he is/was apraxic. Maybe gone from severe to mild? I expect > that things will keep improving with time, but this is really an > unbelievable discovery. Anything that helps is welcome...especially if > it is safe. I have gotten reassurance from the vit E experts that > supplements with E are safe. Giving 400 -800 IU a day of alpha-d- > tocophorol is safe. > > For those out there seeing surges on 400 IU, you can safely give this > twice a day, and observe. I hope everyone keeps posting results - > either positive or negative experiences. This may really help our > kids. - > > > > Ok, Im not really " patiently " waiting. I had Abby's lab work done > > yesterday, and I'm so excited (and curious) to know the results of > her > > Vit ADEK test. I haven't started any vit supplements yet-I wanted to > > know her baseline first. I'm going to give her the E regardless of > the > > results, just to see if there is a noticable difference in her. > > > > Dawn in NJ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 " But my son is still a different kid, and on the playground and in daily life, I am starting to forget he is/was apraxic. " Okay, but please don't do what I did and drop off the forum! We will continue to need your input here!! > OK - I have not been able to receive any email from this site for > days. Hope the problem is now solved. > > The problem with the ADEK levels (although I think they need to be > checked, along with carnitine, is that the blood levels may not > reflect what is in the brain or periferal nerves - where there may > actually be a deficiency or problem with transport into the cells. I > just spent some time talking to a vitamin E expert - who is fascinated > by this story - and she felt that watching clinical benefits is more > important than following the actual levels. If enough people get > levels and find that they are normal, yet the child improves on vit E - > then at some point we might be able to say - just > supplement...getting levels doesn't change anything. At the same time, > if it turns out that multiple vitamin deficiencies ARE identified, > then this may be something to follow. Friends of mine have an > apraxic/PDD child responding to fishoil/vit E combo - who turns out > has low vitamin D and what sounds like mild rickets!! He also has a > positive antibody to gliadin (gluten sensitivity), and will hopefully > benefit from going gluten free. There is so much we don't know. > > My son is being tested by our ST using Kaufman - she has been blown > away by the change in the last month (she was on vacation, so this all > happened WITHOUT speech therapy). On the lower levels he had scored <3 > percentile, a few months later he is sailing through. But on the > higher levels of testing, signs of apraxia are still showing up. It > makes sense that this will take time to resolve. But my son is still a > different kid, and on the playground and in daily life, I am starting > to forget he is/was apraxic. Maybe gone from severe to mild? I expect > that things will keep improving with time, but this is really an > unbelievable discovery. Anything that helps is welcome...especially if > it is safe. I have gotten reassurance from the vit E experts that > supplements with E are safe. Giving 400 -800 IU a day of alpha-d- > tocophorol is safe. > > For those out there seeing surges on 400 IU, you can safely give this > twice a day, and observe. I hope everyone keeps posting results - > either positive or negative experiences. This may really help our > kids. - > > > > Ok, Im not really " patiently " waiting. I had Abby's lab work done > > yesterday, and I'm so excited (and curious) to know the results of > her > > Vit ADEK test. I haven't started any vit supplements yet-I wanted to > > know her baseline first. I'm going to give her the E regardless of > the > > results, just to see if there is a noticable difference in her. > > > > Dawn in NJ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2006 Report Share Posted September 2, 2006 > > OK - I have not been able to receive any email from this site for > > days. Hope the problem is now solved. > > > > The problem with the ADEK levels (although I think they need to be > > checked, along with carnitine, is that the blood levels may not > > reflect what is in the brain or periferal nerves - where there may > > actually be a deficiency or problem with transport into the cells. > I > > just spent some time talking to a vitamin E expert - who is > fascinated > > by this story - and she felt that watching clinical benefits is > more > > important than following the actual levels. If enough people get > > levels and find that they are normal, yet the child improves on > vit E - > > then at some point we might be able to say - just > > supplement...getting levels doesn't change anything. At the same > time, > > if it turns out that multiple vitamin deficiencies ARE identified, > > then this may be something to follow. Friends of mine have an > > apraxic/PDD child responding to fishoil/vit E combo - who turns > out > > has low vitamin D and what sounds like mild rickets!! He also has > a > > positive antibody to gliadin (gluten sensitivity), and will > hopefully > > benefit from going gluten free. There is so much we don't know. > > > > My son is being tested by our ST using Kaufman - she has been > blown > > away by the change in the last month (she was on vacation, so this > all > > happened WITHOUT speech therapy). On the lower levels he had > scored <3 > > percentile, a few months later he is sailing through. But on the > > higher levels of testing, signs of apraxia are still showing up. > It > > makes sense that this will take time to resolve. But my son is > still a > > different kid, and on the playground and in daily life, I am > starting > > to forget he is/was apraxic. Maybe gone from severe to mild? I > expect > > that things will keep improving with time, but this is really an > > unbelievable discovery. Anything that helps is > welcome...especially if > > it is safe. I have gotten reassurance from the vit E experts that > > supplements with E are safe. Giving 400 -800 IU a day of alpha-d- > > tocophorol is safe. > > > > For those out there seeing surges on 400 IU, you can safely give > this > > twice a day, and observe. I hope everyone keeps posting results - > > either positive or negative experiences. This may really help our > > kids. - > > > > > > > Ok, Im not really " patiently " waiting. I had Abby's lab work > done > > > yesterday, and I'm so excited (and curious) to know the results > of > > her > > > Vit ADEK test. I haven't started any vit supplements yet-I > wanted to > > > know her baseline first. I'm going to give her the E regardless > of > > the > > > results, just to see if there is a noticable difference in her. > > > > > > Dawn in NJ > > > > > > Quote Link to comment Share on other sites More sharing options...
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