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Thread: Susan - how is Savanna doing

  1. #1
    pepperlc is offline INCIIDer - A Community Creator
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    Default Susan - how is Savanna doing

    I saw that the last update was about a week old.
    karen

  2. #2
    sugarsue is offline INCIIDer - A Community Creator
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    Default Not great yet

    and now I can't get the neurologist to call me back to answer my questions. I'm sure it's because he does not know what to do and is hopefully trying to figure it out.

    I am still slowly increasing her current medication to see if she can tolerate it until the neuro calls me back but if I increase it too much, she falls apart. She is very emotional, is eating either too much or not enough and is very tired but can't sleep well. I'm close to just taking her off medication and see what happens. On the current stuff she can now tell me 1/2 the time when she's having a seizure and I can't find out from the neuro if that change is OK or not.

    I'm also planning on asking for heavy metal testing and maybe a few other things to see if we can try to figure out if she is having seizures for any particular reason. I even found a psychic epilepsy healer I'm thinking of contacting. Can you tell I'm out of options?

    Thank you for your fast reply to my other post about Sierra. I almost cried just hearing that someone understood and thanks for asking about Savanna. I'm having jaw pain and headaches and I'm stressed to the max!

    Susan

    Susan

  3. #3
    pepperlc is offline INCIIDer - A Community Creator
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    Default

    I'm sure you are grinding your teeth in your sleep which is also causing your headaches besides everything else. Maybe you should get a night guard to prevent that. I wear one that my dentist made for me and it has helped the nighttime headaches and jaw pain.

    I know you work full time but can you get out just for a little bit and get yourself a pedicure? Or maybe take the girls with you and get them pedicures too. Maybe it would help relax everyone.

    You have so much on your plate.
    karen

  4. #4
    angeleena is offline INCIIDer - A Community Creator
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    Default

    Susan,
    I am just sending you hugs. YOu are dealing with a lot right now.

    -Angi

  5. #5
    sugarsue is offline INCIIDer - A Community Creator
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    Default

    Quote Originally Posted by pepperlc
    I know you work full time but can you get out just for a little bit and get yourself a pedicure? Or maybe take the girls with you and get them pedicures too. Maybe it would help relax everyone.

    You have so much on your plate.
    karen
    One thing that has changed is that I took the girls out of after school care and I leave work at 3:30 to pick them up. Then work an hr from home. This saves me a lot of much needed money each month. But it is a huge change and takes away all my free time. I agree that I need some time to myself!

    Susan

  6. #6
    sugarsue is offline INCIIDer - A Community Creator
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    Default Update

    Thanks again for asking about Savanna. The neurologist finally called back. He is putting her back on the last medication she was on. This is the one that MAYBE caused the rash but was the best as far as no side effects. Since she was sick at the time, he is willing to try again but we are going very slowly and watching her very well since the rash is very dangerous.

    Otherwise she is staying on all her current meds for awhile until we see him again in a month. So, probably no update for a while.

    thanks for the support!

    Susan

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