We saw the Nureo again yesterday. He was great and spent quite awhile sitting on the floor playing and observing our little man. He was happy how he was interacting while playing but a bit concerned that when he moved the blocks away he just sat their and made no attempt to reach for them. He then said he felt although he was almost 11months he was quite a way of crawling or walking. We were told at 16months if he is not crawling the Nureo would be concerned. With the DVD I had sent him a few weeks ago he said he wasn't sure what one seizure was it was where he hunches forward fast like in a stomach cramp and arms go forward he does this several times in a row but Nureo said he wasn't overly concerned with it yet, he was though concerned with the ones where his arms go suddenly out to the side or upwards, nearly always in pairs, and he curls his feet when it happens but his main concern was the seizures where he goes to the side and looks vacant he said they look like Tonic Events. I have googled Tonic seizures but would love if any of you could explain them more to me as you have lived either through them yourselves or know someone who has. We are seeing the Nureo in just under a month and I have to email him weekly progress reports. He also has made sure I have his phone number if something happens and we need to speak with his urgently, that freaked me out a little but it also gave me comfort to know I have his Nureo a phone call away. At our first apt with him he mention he would know a lot more by the time our son turns one but now he said he may not know for a year as he may grow out of whateve is happening or he may develop a full form of "Epilepsy" I have a feeling he has a fare idea what is going on but doesn't want to say until he is more sure of it. I suppose with a bub this young only time will really tell. We know our son has "Shudder Syndrome" but these other Seizures he's doing are? The Nureo said your son is NQR (not quite right) but at the moment he feels its best to be "concerned but not alarmed" and wait and see. Our next apt is with his Paed at the end of Dec, then Nureo on 5th Jan, then his Allergist on 11th Jan, hopefully we will get some answers soon.
Thanks.
Donnajane
Thanks.
Donnajane