Second Update on Daughter’s Health

Okay, we got the second opinion today.

The EEG shows "unequivocal" evidence of a seizure syndrome. They had her hyperventilate while hooked up, and the whole brain showed increased activity ("spiking") that doesn’t occur normally. That settled…

Non-treatment can be fatal. Folks have apparently died from uncontrolled seizures (I’m not sure of the exact mechanism here – brain storms messing the autonomous system up?).

The Keppra drug is better than a lot of the others, apparently, and the daughter is adjusting – she was much better the last 2 days – more like her normal perky self, more upbeat. This new doc was much more personable, more open, and we both liked her. 24 hour ambulatory EEG and a 24 cardio monitor will be done next week or so, so we’ll get more details.

things she shouldn’t do:

no travel to 3rd world countries

no swimmng alone,

no baths alone, and don’t lock the bathroom door while in there.

Okay, beddy bye time. more later. i think we all feel a bit better now. thanks to all of you for your expressions of sympathy and support – it does mean a lot.

love you all

Jude

goodgolly

May 23, 2008

oh honey i am SO sorry!! How traumatic! The good news is you have a dr you trust and it is manageable. ~HUGE hugs~

jasspirit

I am glad she is reacting better to the drug and a second opinion is very comforting.

Get Real

I just read your last 2 entries. I’m glad you got a second opinion and have a doctor you both trust. Sounds like you all are in good hands. Good luck to all of you!

I just read the last 2 entries as well, I’m glad you like the new doctor and that your daughter is adjusting to the medication. A second opinon always helps. Much love to all of you, Robin

edna million

I’m glad you got a second opinion for her – that sounds very scary. Having a doctor you like makes a world of difference, too.

Oh my. You should shoot me an email. I am filled with advice if you want it. Having dealt with a seizure disorder most of my life, I can provide some insight into what is going on. theoriginalmary@gmail.com I’m glad to hear that there are steps in a good direction.

Liberalis Femina

I’m sure you were all hoping for better news as was I. Hopefully the drug will not take too much of a toll and there is the hope that something new and less toxic can be found at some point. Is there any possibility of her “growing out” of the siezures?

Whispering Wind

Yeah, is there any chance of her growing out of this type of seizure disorder? What is the prognosis with this treatment plan? Please keep us updated and I’m so sorry about these results. We are here for you.

darcy0207

May 24, 2008

GEEZ – that is so scary – especially for a young person. Good to have a doctor you are comfortable with. I hope this is something that is completely controllable.

I’ve known several people who have seizure disorders and they both have seizure dogs. They are specially trained and can sense when a seizure is about to come on before their person does. The dog will “warn” their person to lie down. They really helped with the people’s independence. ~hugs~

Sir Gawain

geez, poor kid. Good luck to her, hopefully this will manage the symptoms so she doesn’t have to worry.

~Squirrel_Wife~

well it looks like this second opinion was useful but seriously that is horrible and scary to have seizures. I am trained to work with people who have seizures and even so it still scares me. Good luck to your daughter!

sorry I have been so late reading here…work has been CRAZY> I’m so sorry about your girl…seems that you are doing the right thing though…second or even third opinions never hurt. xoxoxo

RYN: I would go for frontal lobe.

OMG I’m even more freaked out after reading your note. You’re right that the black ones are carpenter ants. I hope you’re wrong that these might be swarming termites. I really hope that’s not what they are. God help me. I’m never going to be able to sleep tonight.

Oh, I’m sorry to hear this. I hope the drugs help. Didn’t they tell her she couldn’t drive, too? My daughter, Rachel, had two seizures and wasn’t allowed to drive until she was seizure-free for a year or so. Hugs,