Alicia

Yes there is a specific EEG pattern.

I wanna say at The Cleveland Clinic, theres a doc i thought i remembered swho specialised in this. Might be worth a shot in the dar to look them up. They have an awesome epilepsy center up there, as well as a totally comprehensive metabolic center. If they cant figure out whats going, Id be surprised. With us, we knew in literally...ten minutes of meeting our doc. 12 years wrth of missed diagnoses and within ten minutes. He was shocked it had taken so long for anyone to see the bigger picture. They have awesome metabolic geneticists up there too.

Thanks.. Hopefully we are going to have some sort of answers today, or at least better direction. They are doing some more blood work today.

If it continues then we are going to go in for another EEG. Soemthing that scares me to death, not for the same reasons it did a year ago, but I am more afraid of what it WILL show this time. Things have been bad for a while and everything I pick up and read makes LGS sound like what has going on- the EEG would confirm it...

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

I have been concerned about the little regressions that I have been noticing for the last few months. But like you said with Aiden, there are good days and bad days, on the good days you stop and think, "its not so bad" but on the bad days you are quickly reminded. Rileys progress report had a note attached that said "she is making limited progress this year, her skill vary greatly day to day" That was a reality slap to read..

I ended up giving her diastat after I spoke with her neuro's nurse this morning. She has done better today than she has since the drops started. She only had 3 of them today - and none after the diastat; as opposed to the 10+ she has had ever day since they started.

It is hard when I look back at where Riley was at 3, how "normal" she was then, and then look at her today.

Dr. P told me months ago that Riley is one of the kids that most likely never have total seizure control, so we are looking for that balance between seizure control and quality of life. I am having a tough time accepting the fact that she needs to wear the helmet again. There is no doubt that until we get these thing figured out, and I am leaning toward the Keppra being the aggrivating factor.


Tomorrow is a bright new day and hopefully we will have both the Keppra and Topamax levels back and know what to do.

my thoughts and prayers for riley
 

Denae,

just keep trying I continue to read your posts about Riley
you are marching through a brave battle with your daughter
Robyn

How is Riley doing now?

Kamie

The drops went away after I gave her the Diastat last week. Everything else stayed the same. Friday night we went to the high school football game and forgot her magnet :( we ended up having to give her diastat again Friday night because of her clusters.

Saturday ended up being the BEST day she has had in weeks, if not months. She was happy, playing, laughing and was over all more "alert"

She went an entire 24 hour period seizure free, which is a fisrt for her in a loooong time. It was the most beautiful day even though it was rainy and cold.

Sunday it was back to life as usual, TC's and several partials. Monday afternoon I got a call back from Leigh and as I expected they wanted to increase her Keppra. but she said to LEAVE the Topamax alone, Dr. P didn't want to change more than one thing at a time anymore with her so we would know where the problem was.

So yesterday morning we increased her Keppra by 1/2 a pill in the morning. Last night the drops came back. It could be a coincidence, but I doubt it. Leigh did say we needed to give it a couple of days to see. She got up and had more CP's and went on to school. We will see when she gets home. The kids take a nap at 1, so I plan on calling once they have had time to get settled to see how things have been today.

So.. thats whats been up with us.