Well...... that was the first trial.

He's off of Keppra now. We did see very promising results in the begining, and then it seems the side effects took over...... all of the things I said in my last post. Even his occupational therapist said he was aggressive, and she has not ever seen that in the last 4 years of working with him. His eye flutters seemed out of control, and his stuffy nose for weeks on end could even be linked to the meds. So, with all of these things, we decided to take him off of it. His neurologist wanted me to wean him off, and while he was on a small dose, start the new one. I changed my mind after leaving the office, and decided to wean him off all together. I'm really not worried about him having, "seizures", I Just wanted to see if getting his brain a little more clear, would help him interact with us. But I really wanted his teachers to see him NOT on any meds, so when we did start a new trial of something, they could know the difference between normal Ben, and medicated Ben, good or bad. Anyway, I'm bummed that the good side effects didn't really stick around.... but they were significant enough in the begining to try another one.

That's all for now folks....

Not good. :-(

Okay..... I don't think this med is good anymore. :-( I'm really sad about it. It seems like this happens with every Med we try. He's aggressive. He does his eye thing not fricken stop. I'm assuming it's a Tic, since it actually has gotten worse on the seizure meds. He's hurting me. He literally goes out of his way to pinch me, or kick me, and I don't know why. He thinks it's funny. I'm worried about him alone with Micah for sure. Elijah is always saying that Medicine is stupid cuz it makes Ben angry. There's no fucking winning. Sorry, I know its not like me to swear, but sometimes I just need to. His clarity has been compromised since school started, cuz he's had a bad cold. So I don't even know if that is still there. Maybe there is a different kind to try? But that will probably just make him a zombie. The one they originally tried to give us, they asked, "Does this child have ADHD like symptoms? Oh good, it will calm him down" Just code word for, "it will turn your child into a zombie, but hey, that's okay, cuz he's just too difficult to deal with anyway. I'll take loving, adorable, difficult ADHD Ben, over zombie Ben without little tiny Seizures. It's a battle....... for sure.

Willow

Hmmmm.....

One of the side effects of Keppra was possible loss of appetite...... I wonder if it's possible to have the opposite. Ben is an eating machine. Hungry all the time, finishes his plate in minuets, and is looking for more..... Hmmmm.... I have definitely noticed kids with Seizures that I have known are chubby. That kinda sucks.

Willow

Everything's Good...

Well, good news. We are hearing positive change reports from many others. The photo above is from Wednesday. I was amazed at the Tinker Toy creation he made. He normally won't sit long enough to make something with the tinker toys, but this one was quite creative, and also very symmetrical, more in the beggining stages of it, and then he added stuff on. On Thursday, Christina was amazed as Ben came right up to her and Said, "Grammy, Grammy" and wanted to show her something. She say's it's the first time he has ever addressed her by her name. I will include an exerpt from the email that followed their day in the park with the kids.

"Ben did exceptionally well. Forgot to tell you that he also came up to Wes and asked to be swung and held his hands out to us both. Now we always do this, but he has never asked before. Verbal skills were considerable increased, as was eye contact and the ability to follow directions. One time when we were counting he was maintaining full eye contact, never seen him hold for so long before. He also initiated hand contact with both Wes and me, usually we are telling him. " A Marked improvement in her opinion.

I asked Lizzie his respite care/ babysitter, and she noticed he's talking a lot more. Today at Church he went on a hugging spree. He Hugged Dana, Then Pastor, and another girl he hardly knows. He then walked around saying, "Where's Dude" (one of the Pastors Son's Who we call Dude). I said he's outside Ben. He went to go find him, and found him, and hugged him. Big huge, wide hugs. Ben usually leans in for a Hug, he doesn't give most people big, unsolicited Bear hugs. To me, it was as if he was like, "Hey, I remember you, and you are always HUGGING ME, and I am going to show you I DO LOVE YOU. I DO NOTICE YOU. I just have a hard time interacting with you. BUT IT'S GETTING EASIER FOR ME!! Maybe? A mom can hope right?

The thing that Jason and I notice, is he's not getting so distracted. For example, last week I told him if he wanted a brownie, he needed to get dressed. He was naked. Now, he has never gotten dressed all by himself. 5 minuets later he came downstairs dressed and ready for his brownie. I was shocked. The thing about that is, usually he would get so distracted between going to get dressed, and coming back for his brownie, that he would never actually make it to get dressed. Same with finding Dude to give him a Hug, he asked for him, listened to the directions about where he was, walked outside and hugged him. He didn't get distracted. Hmmm........ coincidence, maybe, or maybe not. I feel like he's getting better. I can see that if your having seizure activity in his brain all the time, that would distract him from completing things. He is starting school on Tuesday, I hope he just blows the teachers away. :-)

Willow

He is definitely more aggressive

Hi is definitely more aggressive
So, I am noticing he is more aggressive. Not scary aggressive, honestly, it's more "normal" then anything. When Elijah pissed him off, he bit him. For his developmental age, that's a pretty typical response. So, yes, I am noticing it, but I'm not really sure if it's a bad, or good reaction, you know what I mean?

Another thing I have noticed, is that he seems to be doing the same or better on 2ml as 1ml. Hopefully he's getting used to it. Still not a huge amount of sleepiness. Nothing like I expected anyway. He hasn't even wanted to nap most days. Always better for his overall nighttime sleep. Plus, he's been waking up early in the mornings. Always a bummer, but Jason get's up with him, so no biggie for me. :-) School starts next week and it will work out better anyway. Then, I will get up with them!

I'm listening to Ben help daddy make me eggs and toast, and all I hear is mixing and daddy saying, "Good Job Ben, Wow....... Good job" Those are the things that make my day. :-)
Posted by They Call Me Momma at 8:47 AM

Day 1 of 2ml

So I started him on 2ml today, he seems more tired and lethargic for sure. But that's about it. Nothing too scary to report. Then again, I have had such a bad headache all day, I haven't been paying enough attention.

Willow

Keppra, the good, the bad, and the wild.

So we started Ben on Keppra 2 days ago, it's supposed to have the most mild side effects. So I'm going to use this forum to write down what I notice. We are starting him even slower and less then the usual recommended does. He is doing 1ml twice a day for 3 days, then we will go to 2ml twice a day for 3 days, and then we will land at 3ml twice a day to stay at. The worst side effect I have been told, is sleepiness. I haven't really seen that so much, but were still at 1ml dose. He does however seem a little extra emotional, and defiant. That is the "worst" side effect, would be to make him aggressive and defiant. At the same time, I think I am seeing him more focused, great language and streams of it. Listening to directions better, and following through. For example, yesterday, I was making brownies, and he wanted one really bad. He was naked as we had just gone swimming. I said, go upstairs and get dressed, and I'll give you a brownie. HE DID IT!! Quickly too. He was down within 5 minuets with a shirt and shorts on, facing the right direction too. I was impressed. Today, along with his defiance, he has spent a good amount of time working with legos. He seems to be staying with things a bit longer. He's making big towers with people at the top, that are all uniform. I will post a photo of a lego creation he made, where everything is uniform, and well put together. I was very impressed. I took a picture of it, which he was excited about. He wanted me to keep on taking pictures. So I said, "build one tall, and I'll take another picture" He proceeded to work on that, but as he was doing it, it broke. He got VERY upset and started taking it apart and throwing the pieces all over the room. So..... is it the good with the bad? Am I just noticing these things good and bad because I'm analyzing every little thing he does? Who knows. We'll have to see as the dose increases what happens. We have to give it at least a month to see if the "bad" side effects go away. We shall see, we shall see.

Willow