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Thread: Finally! Some good news about my daughter.

  1. #166
    Registered User Bob_M's Avatar
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    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

  2. #167
    Registered User Rapid_Roy's Avatar
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    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.
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

  3. #168
    Registered User Rapid_Roy's Avatar
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    Quote Originally Posted by Holly View Post
    Warm thoughts and prayers heading your way, Roy. Wish I could do more.

    Holly
    Hug next year in PA?



    Barry, I just can't quit you.
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

  4. #169
    Bill the Cat geisterfahrer's Avatar
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    Hang in there, Roy. You've got a large community of Beemerphiles behind you and your family!
    Kevin W.
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    Der Weg ist das Ziel!

  5. #170
    ABC,AMA(LIFE),MOA,RA,IBMW MANICMECHANIC's Avatar
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    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!
    F.O.G.Rider, Rounder #6,
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  6. #171
    BMW MOV Muriel's Avatar
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    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
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  7. #172
    Registered User Rapid_Roy's Avatar
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    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.
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

  8. #173
    Registered User redclfco's Avatar
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    Thinking of you all

    to all in Mr. Rapid's house.

  9. #174
    univers zero tessler's Avatar
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    Best Wishes Roy, for Rachael and the family!

  10. #175
    Chromehead bobs98's Avatar
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    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.
    Bob Smith
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  11. #176
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    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

  12. #177
    Registered User Rapid_Roy's Avatar
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    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.
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

  13. #178
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    Quote Originally Posted by Rapid_Roy View Post
    We basically can't leave her alone for more than 5 minutes or allow that possibility.
    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

  14. #179
    Registered User Rapid_Roy's Avatar
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    Quote Originally Posted by ragtoplvr View Post
    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
    Thank you Rod.

    I will say, if wishes came true, we wouldn't be in this mess, and I would be rich and handsome!

    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.
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

  15. #180
    Registered User Rapid_Roy's Avatar
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    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.
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

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