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Thread: Savanna's Update

  1. #1
    sugarsue is offline INCIIDer - A Community Creator
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    Default Savanna's Update

    We are status quo for a few more days. Savanna still has her rash, but now Sierra has a very similar one too so I think we are good to say it was not the medication but a virus of some kind.

    But Savanna's other side effects are completely gone (the extreme tiredness and the strange new seizures). The neuro said to continue on as we are without changing anything until Wednesday when we can see how she is doing. I don't know what he will recommend on Wednesday.

    She's staying on the bridge (tranxene) medicine, the only meds that have ever stopped her seizures. But you can't stay on it for long or it stops working.

    Thank you all for your support posts. It really means a lot to me!!

    Susan

    On another note, for those of you who remember, she had/has a hemangioma birthmark on her forehead. We saw the surgeon who took care of that today for a check in. She still needs a few more treatments to help it look it's best but I think we are waiting until she's a pre-teen and more worried about her looks. It will be purely cosmetic procedures and not covered by insurance so I'll spend the $$ in order of importance, even though she is now saying her friends ask about her strange skin on her forehead and she hates that they notice it. Poor thing! I think you can hardly notice it (compared to what it used to be like) so I am always surprised when she gets comments on it. But somedays it shows up more than others.


  2. #2
    pepperlc is offline INCIIDer - A Community Creator
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    Default

    She is so cute. I'm glad that the current meds are helping for at least now. it gives you time to find answers. Hope she continues doing well through Wed

    karen

  3. #3
    Laura H1 is offline INCIIDer - A Community Creator
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    oh goodness, she is a cutie! (meow!)...

    hang in there... hoping for good news on Wednesday...

    Laura

  4. #4
    JulieATL is offline INCIIDer - A Community Creator
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    Default Meow!....m

    I look forward to hearing what the doc suggests on Wed. I'm glad the new symptoms have subsided and it sounds like the rash is under control.... She's adorabe and it's hard to tell from the pictures, but the scar doesn't look so bad. We have to keep in mind, kids can be mean, and will point out anything that seems even slightly different. Maybe it's time for bangs until you can get her the cosmetic surgery she might ask for when she's a pre-teen. In the meantime, she's beautiful just the way she is.

    - Julie

  5. #5
    sugarsue is offline INCIIDer - A Community Creator
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    Default They've started her back on the Trileptal

    it's the last medication she was on that made her so tired and gave the strange longer seizures. But she's starting on 1 ml instead of 2.5 ml for one week to see how she does. The roller coaster begins again.

    We are also getting a retest OAT to see how she's done on all her supplements. No Apples, raisins, grapes, cranberries or pears for the weekend and we will send the test on Monday. I am excited to see if anything has changed.

    Susan

  6. #6
    pepperlc is offline INCIIDer - A Community Creator
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    keep us posted. will the meds affect the OAT test. I'm pretty excited to see if anything changed too.

    I hope she does better on the lower dose of medicine.
    hugs
    karen

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