Post by dymphna on Feb 16, 2015 16:59:47 GMT -5
My DS has Dravet syndrome, a severe intractable form of childhood epilepsy. Like many things this can present as a spectrum. So far we (his neuro and us) think he's on the less severe end of the spectrum...right now. We don't have a prognosis because things can and do go down hill very quickly. These kids usually stop developing or regress between 2 and 6 years old. He's 3.5. Due to a side effect of his first anti-seizure drug he is delayed in speech and gross motor. After switching meds, he has made huge progress and is doing great in preschool.
His preschool is having a hard time keeping a SLP since a retirement last year so I would like to supplement with private speech. We were evaluated today. We were not able to stay and get the results because the poor kid fell asleep right at the end of the test (I'm not sure if she needs to finish it or not). Anyway I'll see her tomorrow for DD's speech session. The SLP had mentioned possible auditory processing disorder. This has hit me kind of hard. I'm not sure why. I'm usually very optimistic. Is this something he's always had? Is this a by product of the seizures? Even when not seizing his EEG's have always shown generalized activity. How will he ever learn and catch up if his brain is short circuiting 24-7? I know we will get through this but I can't help but wonder is this the beginning of our regression? I'm just worried. I don't know what I'm looking for, just venting maybe, getting it all out? Thanks for listening.