Hi, My little man saw the metabolic unit last week and they said they feel he needs a lumbar puncture and more bloods done. They are going to speak to his Nureo about when it can be done as they are not keen on waiting till the 13th July for his MRI.
His Nureo emailed us back today in response to our weekly email and said he had shown 3 other paedeatric nureologists our sons video and talked with the about other idea of what might be going on. They mentioned Dystonia or PKD (paroxysmal kinisgenic dystonia), which would also need a lumbar puncture so could be tested at the same time as what metabolic are testing for.
On the email the Nureo mentioned he had started our little man on Tegretol as opposed to Epilim as he is not totally convinced what is happening is seizures. He said as the Tegretol is gradually increased over the next few weeks it will help him know more as to what is happening. Could anyone explain what he means by this? Due to my son having so many variants in what he does he is proving vary hard for any specialist to diagnose. We have had 1/2 the specialist say he is definetly having seizures others say they are not sure.
Thanks again for any advice I really appreciate all the help and support everyone gives us on this site in the quest to help our little man.
Donnajane.
His Nureo emailed us back today in response to our weekly email and said he had shown 3 other paedeatric nureologists our sons video and talked with the about other idea of what might be going on. They mentioned Dystonia or PKD (paroxysmal kinisgenic dystonia), which would also need a lumbar puncture so could be tested at the same time as what metabolic are testing for.
On the email the Nureo mentioned he had started our little man on Tegretol as opposed to Epilim as he is not totally convinced what is happening is seizures. He said as the Tegretol is gradually increased over the next few weeks it will help him know more as to what is happening. Could anyone explain what he means by this? Due to my son having so many variants in what he does he is proving vary hard for any specialist to diagnose. We have had 1/2 the specialist say he is definetly having seizures others say they are not sure.
Thanks again for any advice I really appreciate all the help and support everyone gives us on this site in the quest to help our little man.
Donnajane.