Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 hi there We have been doing the rounds at the doctors again... The neurologist suggested we put back on Epilum (valproic acid) and retested his blood works as he is still showing VERY LOW platelet count and very long chain fatty acids, platelets are still low and he has asked us to test his bone marrow, the fatty acid results are still not through. We then got a second opinion from a specialist pediatrician yesterday who said Epilum was not the best choice as it works through the metobolic system, and lowers the platelets, he suggested something called Rivatral (clanazepan?) and said that although he admits that seems to have a metabolic disorder, as much testing as possible has already been done with no clues so the best thing to do is to wait and then have him retested in another year or two. He seems to think we wouldn't have any more luck anywhere else in the world in terms of trying to get to the bottom of what metabolic disorder he has. He said the low platelets are the biggest clue, and that we would need to try and find what would cause low platelets and seizures but there are thousands of conditions and that it would be looking for a needle in a haystack......ie thare is nothing that can be done.......so we just wait??!!!!!!!!!!!!!!!!!!!!!!!??????????????? DOESN'T SOUND LIKE A GOOD IDEA TO ME!!!!!!!!!!!!!!!!!!!!!!!!!!!! Three years down the line and we have got absolutely NOWHERE with the doctors here.nowhere!!! Does anyone know anything about the anticonvulsant he is suggesting???(we have been warned of the side effects) Anyone have any ideas??? We have tried the supplements and got quite good results in some areas but the fits havn't stopped and it seems to be causing havoc with his ABA program...This boy is bright!!!he wants to please and tries so hard, but you can see that his fits are causing irritation and he is mostly whiny and miserable, any help, ideas, or advise would be so appreciated, ( i have also put this to Willis) Lotsa love Janine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 Janine I found that SIGMA TAU pharmaceuticals seem to have a handle on mito disorders related to epilepsy. You can contact a Lambert Deeds at www.sigma-tau.it/na or phone for her at 800-447-0169. Kathy [ ] Hi from SA >hi there > >We have been doing the rounds at the doctors again... > >The neurologist suggested we put back on Epilum (valproic acid) and >retested his blood works as he is still showing VERY LOW platelet count and >very long chain fatty acids, platelets are still low and he has asked us to >test his bone marrow, the fatty acid results are still not through. > >We then got a second opinion from a specialist pediatrician yesterday who >said Epilum was not the best choice as it works through the metobolic >system, and lowers the platelets, he suggested something called Rivatral >(clanazepan?) and said that although he admits that seems to have a >metabolic disorder, as much testing as possible has already been done with >no clues so the best thing to do is to wait and then have him retested in >another year or two. He seems to think we wouldn't have any more luck >anywhere else in the world in terms of trying to get to the bottom of what >metabolic disorder he has. He said the low platelets are the biggest clue, >and that we would need to try and find what would cause low platelets and >seizures but there are thousands of conditions and that it would be looking >for a needle in a haystack......ie thare is nothing that can be >done.......so we just wait??!!!!!!!!!!!!!!!!!!!!!!!??????????????? > >DOESN'T SOUND LIKE A GOOD IDEA TO ME!!!!!!!!!!!!!!!!!!!!!!!!!!!! > >Three years down the line and we have got absolutely NOWHERE with the >doctors here.nowhere!!! > >Does anyone know anything about the anticonvulsant he is suggesting???(we >have been warned of the side effects) >Anyone have any ideas??? > >We have tried the supplements and got quite good results in some areas but >the fits havn't stopped and it seems to be causing havoc with his ABA >program...This boy is bright!!!he wants to please and tries so hard, but you >can see that his fits are causing irritation and he is mostly whiny and >miserable, any help, ideas, or advise would be so appreciated, ( i have also >put this to Willis) > >Lotsa love >Janine > > >_ > > Quote Link to comment Share on other sites More sharing options...
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