Had a letter from the metabolic unit at the hospital and they said they now would like to test our 20month old for Mitochodrial mutations. So off for more blood tests are also going to test for forms of arthritis as well as he has been having lots of cramps lately but thankfully we see very few seizures, if at all during the day now, just a few absence ones but he still has multiple ones over night.
I am so fascinated by the search the specialists are doing to help our little man. Reading others posts on this board I feel we are very lucky as although we have been through some pretty scary periods the meds seem to be helping his day events or maybe its just him "outgrowing" them. He still has really large mood swings and as his Nureo describes him as displaying almost manic behaviour, he is also getting better and better at resettling after his night event's although I still find them hard to watch when I see them on the laptop which is connected to the camera is his room.
What a learning curve this is but my little man's smiles and hugs make it all worthwhile.
Donnajane
I am so fascinated by the search the specialists are doing to help our little man. Reading others posts on this board I feel we are very lucky as although we have been through some pretty scary periods the meds seem to be helping his day events or maybe its just him "outgrowing" them. He still has really large mood swings and as his Nureo describes him as displaying almost manic behaviour, he is also getting better and better at resettling after his night event's although I still find them hard to watch when I see them on the laptop which is connected to the camera is his room.
What a learning curve this is but my little man's smiles and hugs make it all worthwhile.
Donnajane
