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Finally! Some good news about my daughter.

I have been busy riding and getting projects done, and just dealing with life in general.

I found out the light at the end of the tunnel was a train.

She had a 4 minute seizure on Friday last week, and another one on Tuesday.
We have an appointment with the Neurologist on Tuesday next week.
This summer is not starting out so well so far.
 
Keep your spirits up Roy

They have more drugs with less side effects all the time to control seizures.

Sometimes they are the result of the brain repairing itself and will come and go as your daughter grows and gets better. I know of a young lady that actually got a lot better in other respects (cognition, movements, speech) when seizures started.

You never know what the future holds

We are all pulling for you and her.

Rod
 
Hang in there

Hang in there Big Guy!

We're pulling for you.

I'd give you a hug but people might start asking questions.
 
Roy
My thoughts are with you. It is just heart rending to hear about Rachael's condition, and the glacial pace of her progress. Know your support team is behind you.
Bob
 
I have to say, watching her have these seizures scares me in some deep fashion I don't understand or can't describe.
It's really hard to go to back to routine for me. Even though she is usually tired and just sleeps afterward, I want to be with her.
We keep saying calming things to her, but inside we feel like we must do something, anything. In reading this, I think the word I am looking for is helpless.

When I got home today, my wife had the forms ready for the Shriners Hospital in Chicago. We are going down there to see about her Scoliosis, and some other opinions about it.

Thank you all, so far she has had no more, and they are home from school, so my wife has been watching.

She seems really sharp today, perhaps the seizures are signs of her healing. I tend to not get my hopes up easily anymore though, so as not to be disappointed.
 
Roy, if you believe that she is getting better, then she is. How was she a year, two years ago? How is she now? Be positive. I believe you can do it!
 
Roy, I haven't been reading every post, so I probably missed this information . . . do you have a dog that can detect seizures? My neighbor has one for her child, and the dog alerts the mom and seems to calm the child. They had a black lab, and later a golden retriever.

My heart continues to go out to you and your family. My son had one small seizure when he was about a year old, and it was mighty scarey.

Best wishes,
Muriel
 
Well, that is the rub. She didn't have them for at least 5 years, but when we came back from China after the last Stem Cell treatment last May, she had some. They were bad enough in China that they put her on seizure meds. We discontinued them after our Neuro here said the eeg showed no seizure activity. Since then she has had about 6, but the last 2 were very close, otherwise they were at least 3 months apart. She has not had any long ones, they have all been less than 5 minutes, but sometimes my wife panics and uses the Diastat anyway. I don't blame her.

We already have a dog, and she seemed to know something was up, but she didn't react much for these last 2. We are not sure if they are seizures or spasms, I don't know. Either way, they seem to be involving less of her body, but this last one was weird because it seemed to be more on her right side, and the left side of her brain wasn't really damaged by the West Nile.

Anyway, Thank you Beemerphiles, for your well wishes, we shall soldier forward with that much more determination. I don't know if I can ever really consider this "done" but that would be great.
 
Roy - It is my sincere wish that Rachael heals in the best way possible, and that you and your entire family continue to provide the strength and support that she needs during these difficult times. My prayers are with you. :wave
 
Roy, if/when you put Rachael on anti seizure meds, remember that grapefruit reacts with many of them. Many fruit juices have grapefruit in them. Sunny D is one. So does Freska pop, a former favorite of my daughter and responsible for a nice 20 minute seizure that I had to watch, NOT something I ever want to repeat.

You all have my best wishes.

Rod
 
Thank you all again, and Rod, Thank you for that info on juices.
We stay away from soda with her and water and juice are pretty much all she can have. I will make sure we talk to the Dr about that.
So far, I have not seen anything, but she seemed really tired yesterday, and I can't help but wonder if we just missed one.
We basically can't leave her alone for more than 5 minutes or allow that possibility.
 
Rapid_Roy said:
We basically can't leave her alone for more than 5 minutes or allow that possibility.
Click to expand...

OH Roy, when I read that line the old memories came flooding back. I know exactly how you feel after going thru that with My daughter. Only advice I can give you is find the time for sleep, even if you have to hire sitters, sleep in shifts, whatever. You get depressed without enough sleep.

You have my best wishes, I wish I was closer to meet you sometime or find a way to help you a bit.

FWIW, she is NOW 100% controlled by meds, very minimum side effects.

Good luck.

Rod
 
ragtoplvr said:
OH Roy, when I read that line the old memories came flooding back. I know exactly how you feel after going thru that with My daughter. Only advice I can give you is find the time for sleep, even if you have to hire sitters, sleep in shifts, whatever. You get depressed without enough sleep.

You have my best wishes, I wish I was closer to meet you sometime or find a way to help you a bit.

FWIW, she is NOW 100% controlled by meds, very minimum side effects.

Good luck.

Rod
Click to expand...
Thank you Rod.
:wave
I will say, if wishes came true, we wouldn't be in this mess, and I would be rich and handsome! :ha

She is having her e.e.g today, we will see what is what. Perhaps they are not seizures, although they seem to be. Either way, we'll get some answers.
 
THe e.e.g showed "some" activity, so he has prescribed seizure meds for her.
We have mixed feelings about this, but I guess we will see what happens.
 
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