This is insane- Seizure med issues
 

Over the last couple of weeks we have been having AED issues, mostly due to an increase in her partial seizures that Dr. P increased her Topamax, after nearly 6 weeks she was still having a bad taste in her mouth and was still really sluggish. So as my previous post about her meds stated we started on Keppra and are reducing her Topamax-

Since last Friday she has had more big seizures than I care to count. She is having about 3 a day. On the positive side she is having less of the partials. Not really the trade off I was looking for though.

Monday I talked to Leigh and she said that we needed to add a 1/2 of a Keppra in the evening and still continue reducing the Topamax. Which we did, Wednesday night she had 3 big seizures in less than an hour and a half, one lasted almost 7 minutes with diastat. Then Thursday morning she had partial while having breakfast and two more at school. I called again and when some new nurse called me back she said that Dr. Parrott wants her to INCREASE her Topamax to 200mg twice a day.

I know that can't be right.... I mean how can it be?

She was having issues on 350mg a day. The nurse looked at it again and read it off to me, that is what it said.....
I refused to give it to her at that dose when we were down to only 275 a day. You can't increase to nearly double her current dose like that especially on a med that she was having problems on at higher doses.

This was at 4 yesterday afternoon. She was going to check again with him and call me back. I am still waiting. I thought certainly she would have called back yesterday.


This is nothing but a vent, I am so frustrated with these seizures. I can't stand to watch Riley go though anymore. I just can't.

I wish I could understand why her seizures are so hard to control.

That's the dose "I'M" on at 200 pounds, 6 foot tall...and Im having problems, denae. I would tell him to fly. Not to sound rude or anything, but if they are that worrisome, I would have her sitting in the ER and not leaving until someone did something "NOW". That's a HUGE **** dose for a 7 year old kid to be on. Mistake or no mistake, I'd be calling him on it.:eek:

just a thought...have they checked her ammonia levels at all? I hada hard time with Lauren until her ammonia levels were in sync...calcium too.

The last time her levels were checked the only thing that worried me was her co2. It was a little low, but not low enough to worry according to her ped.

It is just frustrating, period...

Shehas been through periods of increased seizures before and we waited it out. only one other time was it due to an AED, and that was resolved pretty quickly when she came off of it and onto something else.

As for the "huge" dose, she ISN"T taking it. I told the nurse I would NOT increase her back to a dose that was bothering her.

Anything Ri has ever been on needed to be at the high end for any sort of results. Topamax didn't very little for her until she was at 275, and even better at 300... 350 was just to much....

(sigh) It is not drastic enough to sit in the ER and risk catching some nasty virus only to make her seizures worse, at this point.

I am sorry but I am going to speak my mind. I would think a 7 minute seizure requires a trip to the ER if the diastat is not helping much. I would hate to see a repeat of last year.

I would be searching for a neuro for a second opinion, or an epilogist if you are so concerned about her med levels and all her other issues.

No one jump on me for saying this, well have our own opinion.

Oh, man, Denae.

(((((hugs))))) to you and to sweet Riley!

Sounds like it must be some sort of mistake. Could it be the keppra dose he meant to increase? Just wondering, although it's not like you need to be dealing with guessing games at a time like this.

I am so sorry you had to use diastat, although I am glad it helped.

I hope he calls soon. With some answers.

All together now- WE HATE SEIZURES!!!!!

(((((hugs)))))

Hi Denae,

Totally unscientific here, but during a dreadful bout with seizures at the beginning of this year, Sammy's neurologist continued to increase his keppra. The seizures got worse and worse until he finally backed off the keppra and added another med (depakote). Of course I don't know if the increase in keppra was related to the increase in seizures, but it certainly made a remarkable difference in seizure activity (down from 30 or so a day, to one or two and then none) when the keppra was reduced and the depakote added.

I'm so sorry to hear all this :(. My thoughts are with you.

Cara

I think we need to stickify this thread to warn other parents about the seriousness of seizure med issues.I will take the liberty of doing this now..so,it doesn't get forgotten.:)