I sent Nureo my sons weekly update last night and attached footage of how he staggers and struggles to walk/focus when he wakes up. The Nureo said he was definite my 16 1/2month old was as Nureo calls it in a "fog". His Nureo has always said it could be this or... but this he was sure of. He said it is probably caused by seizure activity while he is sleeping overnight and during naps. I am sure he will look into this more. He is sending us out a script for Tegretol on Monday to use as a trial at night, but has said to use it only if the the Specialist at the Metabolics unit doesn't have an idea of what is happening. We are seeing the Specialist on Wednesday so I doub't we would have the script by then anyway.
Does anyone else's child use Tegretol? I have read some not so good things re it but I trust his Nureo and know that he never prescribes meds unless he feels they will do more benefit than harm and improve a childs outcome. We have seen this specialist for around 7 months now and even though my son has been having a varitey of what he calls look like Epileptic events he has never given him meds. He has given me a script for them but told me not to fill it unless he tell us to and so far he hasn't felt the need.
I feel like we are one step closer to helping work our what is going on with my little man.
Does anyone else's child use Tegretol? I have read some not so good things re it but I trust his Nureo and know that he never prescribes meds unless he feels they will do more benefit than harm and improve a childs outcome. We have seen this specialist for around 7 months now and even though my son has been having a varitey of what he calls look like Epileptic events he has never given him meds. He has given me a script for them but told me not to fill it unless he tell us to and so far he hasn't felt the need.
I feel like we are one step closer to helping work our what is going on with my little man.