EEG Update

Ok the neurologist's nurse called back and basically said that there has been a big difference in the eeg from before where it was very disorganized to now where Aidens background is now normal and there are none of the burst suppression patterns that you see with ohtahara syndrome.

What does this mean exactly we're not sure. The problem she said is, it is a syndrome and we are comparing apples to oranges because they are 2 eegs seen by 2 different people and they say at the time you fit into this syndrome ... she said the dr is very optimistic on his new eeg and she isn't sure if this changes his diagnosis, but it dosent change the treatment. On our apt on the 29th he wants to talk about drugs and possibly weaning aiden off of the phenobarbital which scares the Crap outta me!!!! Just because this was the first drug he was put on and we have used it in the past to stop the seizures when they were out of control. I worry of corse that as soon as we change something that the seizures will come back. But the dr said there are side effects with the phenobarbital. So we will see what he says on the 29th.

She also said that the activity in his brain that is or can cause the seizures is not localized to any specific are just little areas throughout which is a little discouraging because it means there isn't one area causing the problem, which would indicate he dosent have a malformation in his brain and wouldnt be a canidate for the hemispherectomy (brain surgery)  but they can use that information for treatment because some drugs work better for different activitiy... good to know!!! I was also able to get a straight answer on what kind of seizures aiden is/was having he's having complex partial seizures... information we didn't even know before!!! So although I would have loved for them to say oh crap sorry there's been a mistake! That is not the case (yet) lol and it dosent seem like it will change the treatment or what is currently going on. So I will celebrate the great news and will have to start my list of questions for the 29th!!!:

What does this all mean your probably wondering? i do know that with normal brain waves he does have a greater chance of developing !!!! This of corse is our biggest wish and prayer!!!

On another note I would like to thank everyone who is involved in helping, donating and spreading the word about Aidens Benefit this sunday! It is amazing and I wont lie a little overwhelming how many people my sweet little squishy's story has reached!!!