Dear Denae,
I'm so saddened to hear Riley isn't doing well. I had high hopes for her VNS too.
I dread getting a LGS Dx for Aidan myself. We are about to have another VEEG for him, at a different Hospital than last time and this Ped Neuro agrees with me that he should be kept there until every type of possible seizure I think I've seen gets captured. Hopefully, at this point, Riley's Neuro thinks the same way.
Right now Aidan is weaned off all AEDs and actually doing better again at his baseline. The trouble is he's so unpredictably variable and loves to make a liar out of me. When I brag about what he does he'll present as a head dropping zombie. When I get freaked out and worry about regressions and worsening tone he decides to show off. I kid about it being deliberate and say he's a stinker.
At out Neuro appointment last week the Dr and the teaching intern both reminded me that every AED can sometimes paradoxically CAUSE seizures. They also both said that there is often an AED honeymoon, which can end anytime and an AED that once worked can change to one that worsens seizures.
He brought out a VNS for us to look at, but says he wants to try a couple more meds first, after the VEEG, because meds can always be thrown out if they fail, but the VNS is in to stay. Maybe you can find out if there is any chance that Riley might be better off with only VNS adjustments?
Another thing our Neuro said last week was that sometimes total seizure control can not be achieved. Then, you need to strike a balance between acceptable side effects and preserving the baseline level of highest function and awareness. He said there is sometimes a fine line between overall "quality of life" staying medicated, versus having some seizure "down time".
You do need to know how to stop the decline though, if at all possible.
Sometimes I feel certain that Aidan is going down hill. Then, I'll notice he's having such a good day that I doubt myself again. It goes back and forth.
One big improvement for Aidan drug free is his eyes. They have completely stopped crossing (knock on wood) and are staying focussed. I had noticed a gradual worsening of alignment and a continuous dazed look had crept over his eyes, after 6 months on Vigabatrin. Then, of course he was totally out of it on Dilantin, for a month after his GTC hospitalization.
Having a child who is not expected to ever walk or do as well as Riley is difficult. Coming later to the possibility of constant supervision, helmets and wheelchairs must be so difficult too.
Whatever we deal with, it's an adjustment that never ends, isn't it? I share your anguish. I hope Riley is still having good days and making progress, when she does. I love your adorable redhead!
Hugs
Heather