So we had a follow up neurologist apt today and I'm feeling pretty good about it. I just went in with my list of questions and wasn't afraid of "offending " the dr by questioning her... we taked about my feelings on the drugs, why we wernt trying other ones and about some I have heard of working well with other kids that have this... so I feel like we have a goal and a plan on getting there... I still don't care for the dr, but I did find out that this syndrome is not reported anywhere so really there's no way to tell how "rare" this is because no one is really keepeing track and the dr we have said we are not her only patient with this . And I did see n her office that she does have some pretty big awards... so i think from here it will just be us being assertive in what we want.
I'm starting this blog to keep family and friends updated on our little man Aiden's progress through his fight with Ohtahara syndrome.
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