Well, the seizure specialist wants to put me in the hospital and take me off the topamax and do eeg's. He's not sure if I have seizures or migraines or bothor what. He want's to get to the bottom of it. I can't drive again for at least 3 mths. I'm concerned about going off of 200mg of topamax at once when I went down just 25mg it gave me horrible migraines. :dizzy: I worry about convulsions or something like permanent brian damage. Ugh!

Hi,

Our daughter (16 yo) did the EEG monitoring you're talking about, last August. It is really a good way to safely get the information they need. You are monitored very closely and if they feel things need to be altered, they will give you meds while you are there. Our daughter had to come off of 3000mg of Keppra. She didn't have the seizures they needed the first couple of days (because the med was still in her system), but they showed on the 3rd day. She was in for 6 days. They had a direct IV line to administer meds ASAP, if needed. She will need to do it again in April, to prepare for her surgery. We feel comfortable because of the level of monitoring. They also had her on video and audio during her seizures. Good luck...it is only a temporary inconvenience, and good info will be gathered for your treatment.

Vicki
mom of Katie, the most courageous young lady I know

Long term monitoring can be a great way to have more knowledge of what is going on! It is certainly a safer way to go off meds and let them record seizures.

There are people who have a tough time having no seizures while being monitored. There is a neurologist joke that the perfect cure for Epilepsy is a video EEG. My son is one of those. We had an 8 day, 2 day and 11 day VEEG that showed some abnormality but no siezure except one very brief tonic hand seizure.

Hope you will have a good stay. Take things to keep you occupied, even somethings to add a little stress like paperowork, taxes. etc. See if the unit has a VCR and video game station for you to use. We had to bring games since theirs kept getting stolen.

Best wishes.

How funny you should say that...we had the same "performance" issue. Kind of like waiting for a kettle of water to boil, if you watch it, it takes forever!

We would make signs and hold them up for the EEG techs and they would turn the audio on and laugh with us...it was cute! ;) Anything to pass the time! We also ate like piggies...they had a great kids menu, on demand. Food 24/7, that was the life, I swear I put on 10 pounds! Sorry, trying to lighten things a little...

Katie had nurses that were with her on the first few days of the stay and she had no seizures. By the end of the week they were coming back to check on her to see if she had had any. "You're still here!" Finally when IT happened, a bunch of nurses came running into the room to cheer for her, because they all knew how hard she was working to "have" seizures. Imagine coming out of a seizure and having 5 nurses clapping and cheering, and Katie didn't have a clue as to what was going on...it was a humerous moment tho! :)

You definately want to bring things to do, and the more stressful the better. Taxes are a good suggestion! Hahaha!

Good luck...

Vicki
mom of Katie, the most courageous young lady I know

I don't know much about the meds that they would administer through an i.v. for seizure. Can they prevent brain damage or stroke? I'm pretty concerned that it's a perfect set-up to have a big seizure that I may not ever have other wise. I feel like a lab animal. :-( I do want answers and it's probably the best way to get them. I just don't want to loose my mind or speech. I have 4 beautiful daughters that I want to raise.

Hi,

First, the IV is standard procedure (from our experience). It is kept in you (our daughter's wrist) incase they need to administer seizure med if a seizure continues too long. Have you actually had a seizure that you know of?

Second, it is the safest place to be to gather info. You are monitored constantly. I made a joke about holding up signs for the EEG techs over the course of the week, we had to make it fun! They were long days. Because Katie is a minor, my husband and I needed to be at the hospital around the clock, in shifts. I did the 8am-8pm and he did the 8pm-8am. We needed to be there to push the button when she had a seizure or any type of behavior that we thought the EEG techs should mark on the EEG.

You should ask your doctor about the brain damage and stroke issue. I don't think there is anyone here that can answer that for sure. Many of us have had children who have had MANY seizures over the years (ours included) and they are doing just fine. The brain can withstand many things. But if you are not comfortable, your doc should certainly have the answers.

Good luck to you as you make your decision. You mention you have 4 daughters to raise and I guess I would want to know for sure what I was dealing with so I felt more comfortable. Maybe you are taking medicine you don't even need, maybe you need another med, or an additional med. You may not know until you do the testing.

Vicki
mom of Katie, the most courageous young lady I know

p.s. you can read all that we have been through and where we are headed with our daughter under the thread "EPILEPTOLOGIST! PLEASE HELP FIND A..." The decisions we made have not been easy or taken lightly...Good luck!