Something strange & Heard from Dr.P

[Denae]

Saturday when we were going up the chair lift to the park I was taking some video clips of the kids. I asked Riley "Hey, where are you going?" and she with this blank look on her face repeated back to me exactly what I said to her, so I said "no, tell me where are you going" again she repeated me word for word- then I told her "say I am going to Ghost Town" she again repeats me word for word.

My first thought was that she didn't understand what I was asking her, she has a hard time with abstract stuff like asking her where she is going tomorrow, or where she went yesterday- you may as well be speaking another language.

We were there, she knew where we were going we were just talking about it seconds before I was doing the clip. Her face was just blank, like she was there but she wasn't...

I asked Leigh about it when I talked to her this afternoon, she didn't know what to make of it, she asked if I thought it was seizure activity- All I could say was I hope not... I really don't know, I didn't think seizure when it happened, I was more concerned that it was a cognitive issue- the only problem with that is that it was out of character and after a few minutes of "confusion" she was back to herself.

Another issue- Riley is back to not sleeping.. maybe two to three hours at a time.

About the Klonopin- Dr.P said we could add it to her Zonegran or we could give the Zonegran more time. I know it helped her almost instantly when she was on it before, but the fact that everything I have read about it says that people become tolerent to it (and of course knowing Riley and her metabolism) I am concerned that she will need continious increases to maintain the seizure control- when she maxes out then what? - all big "if's" I just don't know...

[grace]

Sorry Denae but I would have thought seizure pretty quickly if she was blankly repeating verbatim.

I'm glad you can add the klonopin but you;re right, then where do you go if she maxes out? At the same time, maybe the seizure break , hopefully, will help postpone the progressive part of seizures begetting seizures and let her get in more developmental milestones which would be an asset to her in the years to come. personally, i'd go for even a bit of klonopin and enjoy every bit of relative normalcy that you can get with it for as long as you can. Hopefully if it stops working at some point they will have come up with a new med that works for her.

hugs...
lucinda

[mpalmer118]

Denae,

When Rachel suffered from pyscho-motor slowing as a side-effect from the Topamax, this was exactly how it started. Rachel would just parrot back anything said to her, and then it progressed to where she seemed to be in a kind of dream state. She would lay on the floor with a (scary-not all there)smile on her face and just roll back and forth, and she would not speak at all except to repeat stuff said to her. I know Riley is off of Topamax, but I am wondering if Zonegran could have the same effect?

The psycho-motor slowing wasn't listed as a possible side effect anywhere except in the full insert. We went through a horrible nightmare with it being misdiagnosed and treated as a status seizure. Rachel ended up in the hospital for 2 weeks and it took months to recover from all the drugs they doped her up on.

Please, please go online to Zonegran's site, or call the pharmicist and ask about that being a side effect. I don't want to scare you, but I can't bear the thought of someone else having to go through what we did.

[mpalmer118]

Sorry, I don't want to be pushy:rolleyes: but, here is a link to the full packet insert for Zonegran, psycho motor slowing is listed as a possible side effect.
http://www.eisai.com/package_inserts/ZonegranPI-12-2004.pdf

Rachel's reaction was pretty severe but wasn't recognized right away for what it was, even though she was in one of the best Children's Hospitals in the country.

Okay, I'll shut up now.

(((((hugs))))

[RathyKay]

(((Hugs))) I have no idea. I guess I don't tend to think seizure for echoing, but it does sound like there is something going on... extra "noise" in the brain? (And, am I in denial that that's not the same thing as a seizure?) And, extra noise always seems to go hand in hand with sleep issues. Mary's post about Rachel sounds possible.:( Definitely something to keep an eye out for.

On the Klonopin, I really don't have any advice to offer. When you posted that she's been diagnosed with LGS, I went and did a little reading. One of the general info sites I visited talked about LGS folks requiring high doses of AEDs to get any kind of seizure control. And it mentioned the behavior problems resulting from those high AED levels. Anyway, I'd probably give it, and pray for the same results you saw before, and that they last as long as possible.

((((Hugs))))

[Mother's Heart]

always something more, isn't there?

Did that conversation happen around the time of that photo you took on the lift when Ri had that blank look going on?

Another thought I had was perhaps she was post-ictal when you asked the questioin, and not quite thinking clearly yet. That sounds a lot like what I used to do following a seizure.

[Denae]

Mary-

Was Rachel like that all the time or just periodically? I haven't seen Ri do it again (yet)- I read the insert about the psychomotor slowing but I thought it would be more constant, or even that it would occur at about the time the Zonegran would peak in her system.

Kathy-

Extra noise, I like that definition! I am guessing that might be the same as those spikes on the EEG though. I can't figure the sleep thing out, it isn't matching up with any changes at all. I don't *think* she has eaten anything she shouldn't have either, that was one of my first thoughts when the sleep stuff started back up. You know when Dr.P told me LGS, so much fell into place in my head and that (requiring higher doses) was one of the first things I remember reading that came to me and hit as "well that makes some sense" Right now she is on 350mgs of the Zonegran...

I still don't know about the Klonopin, I sent Dr.P an email yesterday afternoon with my list of questions and concerns about the Klonopin- Trust me I want to jump on it b/c I saw the amazing difference before..

Long term use concerns me though- It is a Benzodiazapine just like Diastat- How will the possibility of her building up a tolerence to Klonopin affect the effectiveness of Diastat when needed? - Last place I want to make trips to is the ER for clusters and long seizures (which are a several times weekly occurance now) If it loses its effectiveness how hard will it be to take her off of it? I have a friend who's daughter is on it and it isn't doing much to help her, but when they have tried to take her off of it she has gone into a status seizures both times.


CJ-

I am not sure which photo you mean? On the back of that train? That was taken several hours after the incident on the lift, She may have had CP seizure while we were waiting in line and we not noticed it, thinking about it she was quiet but she was also cold and it was drizzling so she was covered up until right before we got onto the lift. The only thing about it being PI, we had just been talking about everything we would see and do when we got to the actual park.

I just watched it again and noticed that she is twisting the ends of the blanket in her hands while it is going on, then once she “comes back” the twisting stops- that makes me wonder .… In the past she has had CP’s that include preservative behaviors, like if she is drawing she will continue but the marks will be repetitive and random.

[mpalmer118]

This all happened when she was about 3 1/2 and I should state right off the bat that psycho-motor slowing is rarely as severe as Rachel's and the way it manifested is unusual.

It started out just periodic, she had a few spaced out incidents lasting for 1-5minutes of just parroting and then was fine or slept. Inspite of us stating repeatedly that these did not look anything like her normal events, the neuro (ex) decided it was a seizure and upped her Topamax dose. BIG mistake. The spells became more frequent and it was like she was in a dream like state, not sure how to describe it exactly but kind of how I imagine some one on illict (like LSD or something) drugs would be, not all there, slow dreamy smile, and still parroting back anything said to her. They sent us to the local ER, where they yet again increased her Topamax. even BIGGER mistake. By the end (right before she was admitted) she was not coming out of it at all. She was either asleep or in this dream state.

What scares me is that she was admitted to Cincinnati Childrens and seen by at least 6 neuros at the hospital before someone figured out what it was going on, even though my DH and I kept stating that this was far from a "normal" seizure for her (at the time we thought she had E). We now know that the increase in dosage increased the side effect, and it is possible that if the med had been lowered, and then more slowly increased it might of eliminated the effect. I am hoping that if it is pyscho-motor slowing with Riley that it will taper off. I would be cautious of any increase in meds right now.

(((hugs)))

[Denae]

WOW, what an ordeal!

We are NOT going to increase her Zonegran anymore. She has been on it before and couldn't handle 400mgs. 400 actually cause a huge seizure increase after months of doing fairly well- which is what led us to Topomax... At this point we are going to either add something or just give it time...

I really don't know.. I missed a call from the neuro today, so I have to wait till tomorrow to talk to them...

Right now just sucks, but I know we will get through it we always do...

[Carly'sMa]

Denae,

I know that benzos are addictive, etc. And, if it loses its effectiveness at some point -- well so what? If it works now, it works. She needs time - and if this med gives her time to be seizure free, to make what gains she can - the I say go for it and not worry. Wouldn't it be great if it worked without problems and by then - maybe better drugs or more answers.

I don't know if I'm' making any sense - and maybe I don't understand the situation. But, that's my 2 cents worth.*grimace

[Denae]

You know that is EXACTLY what has me so torn... I want to give her the good days where I KNOW I can get them... BUT at what cost?

If she has some good days and keeps having them even if it takes increasing as it loses effectiveness- what will happen when it loses its magic for her and the seizures return and diastat loses is punch when she needs it?

Thats my biggest fear and the one thing at this point that is holding me back...

Right now we are waiting and watching her, one more seizure like she had about an hour ago and we are back in the ER- but thats a whole 'nother post.

[mpalmer118]

I just watched it again and noticed that she is twisting the ends of the blanket in her hands while it is going on, then once she “comes back” the twisting stops- that makes me wonder .… In the past she has had CP’s that include preservative behaviors, like if she is drawing she will continue but the marks will be repetitive and random.

This actual does seem to push it more into the seizure category. Which makes me feel better. Not that she is having a new seizure, but that you won't have to go through what we went through.

[Denae]

I wish I knew how to get it online... I have watched it so many times that I am almost convinced it was some sort of seizurey type thing...

Haev you ever seen some one "wringing" their hands? It almost looks like that but with the ends of a blanket in her hands, she had it drapped over her shoulders like a cape.