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  1. #21
    Posting Addict AVoiceInTheWilderness's Avatar
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    Hear anything?
    Marie
    Old username ~ Mom@41

    Missing my many lo's in heaven....
    DS ~ Kaden
    DS ~ Carson

    ~Thank you God... for healing what doctors could not fix~

  2. #22
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    Hi Marie! I was on Jan. '08 with you Welcome back!!
    Mandy (DH-Chris (10-21-06)) (DS-Niko) (DS2-Jacob- 5-23-11) 6 furbabies

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  3. #23
    Posting Addict AVoiceInTheWilderness's Avatar
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    Quote Originally Posted by mw7_7 View Post
    Hi Marie! I was on Jan. '08 with you Welcome back!!
    Thank you!!
    Marie
    Old username ~ Mom@41

    Missing my many lo's in heaven....
    DS ~ Kaden
    DS ~ Carson

    ~Thank you God... for healing what doctors could not fix~

  4. #24
    Posting Addict AVoiceInTheWilderness's Avatar
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    mujul79....Any updates? My son had another seizure ..2 wks ago ..He is now on topamax. they started him at 15mg, but he had some not so great side effects, so went down to 7mg, now he is back up to 15 (2nd night) ..They want to work him up to 75 mg. He will be having a consult with a sleep specialist Jan 4 (my request, want to rule out apnea...etc) and will also have an appt with a pedi endocronologist on Jan 6 to look into a hypothalmic disorder (2 issues going on? we will see - geneticist and neuro think so tho)

    Anyways, update when you can
    Marie
    Old username ~ Mom@41

    Missing my many lo's in heaven....
    DS ~ Kaden
    DS ~ Carson

    ~Thank you God... for healing what doctors could not fix~

  5. #25
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    Welcome back, Marie

    So sorry to hear about your DS. That must be nerve-wracking.
    ~Mary

    DD 2/'07

  6. #26
    Posting Addict AVoiceInTheWilderness's Avatar
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    Quote Originally Posted by FLSunshineMom View Post
    Welcome back, Marie

    So sorry to hear about your DS. That must be nerve-wracking.

    Thanks Mary.....So so hard can't really put into words. He has a few appts coming up this week...hoping for some additional direction..
    Marie
    Old username ~ Mom@41

    Missing my many lo's in heaven....
    DS ~ Kaden
    DS ~ Carson

    ~Thank you God... for healing what doctors could not fix~

  7. #27
    Posting Addict mujul79's Avatar
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    Heath is having "events" (but we so far are not doing meds, genitics is set up for next week) He did have a few other visits since we last talked. We are also on CPAP for his apnea now at night. Peter had an MRI on fri and we get results in the morning.

    EDS is what they are tesing for. Tessa started having symptoms over Christmas a long with all the boys (Simon is not hitting milestones and has butt dimples)

  8. #28
    Posting Addict AVoiceInTheWilderness's Avatar
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    Quote Originally Posted by mujul79 View Post
    Heath is having "events" (but we so far are not doing meds, genitics is set up for next week) He did have a few other visits since we last talked. We are also on CPAP for his apnea now at night. Peter had an MRI on fri and we get results in the morning.

    EDS is what they are tesing for. Tessa started having symptoms over Christmas a long with all the boys (Simon is not hitting milestones and has butt dimples)

    Oh no .. all the kids? This is heartbreaking news . How did Peters MRI go? What type of EDS do they feel you all have?

    Kaden needed to switch seizure drugs. He was having serious side effects from the Topamax, so they switched him to Lamotrigine, the drug I did not want due to increased risk of the rash that goes with them all. He is titrating off the Top while starting to take Lamotrigine. Should be off Top completely in 11 days. These drugs are so so scary and I wish he did not have to be on them.

    His sleep study consult went well, they want him to have one. I scheduled for end of January, but will be changing to end of February. Kaden needs a break ... He has had so many EEG's close together...hates the stickies and the smell that goes with.

    Waiting for endo blood work to come back. Also, his neuro wants him to see a cardiologist, waiting for them to call with appt. This is due to his pulse rate being low when he saw the endo..It was 60. She wants to make sure there is no issue there.

    You hang in there. Being scared for you kids all of the time - health issues. The stress...Sending hugs your way...
    Last edited by AVoiceInTheWilderness; 01-11-2012 at 02:46 PM.
    Marie
    Old username ~ Mom@41

    Missing my many lo's in heaven....
    DS ~ Kaden
    DS ~ Carson

    ~Thank you God... for healing what doctors could not fix~

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