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Thread: generalized convulsive epilepsy with intractable epilepsy & septic shock God is good

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    Default generalized convulsive epilepsy with intractable epilepsy & septic shock God is good

    My daughter also has generalized convulsive epilepsy with intractable epilepsy and is allergist to most AEDS meds. Just recently she was hospitalized for septic shock due to an ear infection and sinus infection that I finally got the doctors to listen too. She became very sick and we almost lost her to sepsis and acidosis. This totally shut down her body, but now on top of all this going on we had to try to still control her big seizures!! Yikes what a mess!! God is good!! We watched as he touched every organ in this young adultís body! She is a talking testimony of his goodness!! She too at 5 days old starting having seizures on us, She was also diagnosed with sca8 a rare genetic disease in 2006 as a gene carrier and after this last month long hospital stay she has been diagnosed with Autoimmune hematologic anemia 2013 and has had 8 blood infusions another rare disease . I have to say while she was in the hospital I did see a change to her seizures when all her blood work numbers were up where they should be we saw less seizures. Medication can change your white and red counts . While she was in the hospital she had kidney and renal failure, respiratory failure, liver and spleen damage she was placed on dialysis CRRT to help jump start her kidneys and renal. "Angels were in that ICU room for her three week stayĒ CRRT did something it washed all old meds out and all toxins., but something happened something good happened she was seizures free for 17 days!!! I remember watching her stomach start to jump all around like it was out of control, and I remember the nurse pinching her in the chest (breast area) as hard as she could four times... she told me if it was a seizure it wouldn't stop ... I remember looking at her saying ... I believe that's God and has his hands are in there touching and healing every organ that has been damaged. She looked up at me and said," I like that! ďAnd all at once it stopped...! And we never saw it happened again. She is having her seizures again ,but until the hematology can figure out her blood counts we will put all of our trust in the Lord ,and Thank him for every day he has shared her with us ! Sue

  2. #2
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    Hi Sue,

    I am so happy to hear that everything went well for your daughter, I do agree with you God is good. I have had 2 brain surgeries and God made my life better and He was right
    there with me during each surgery not to mention 41 yrs. of sz. I couldn't understand why I got epilepsy when I was a kid but yrs. later as an adult with the type of job I have
    working with kids that have disabilities it all makes sense because I can relate to there problems.
    If you want to find the right med for your daughter ask the Dr. to do a DNA test on her this will tell what AED's will work the best for her with the least side effects. I had this
    done a couple of yrs. ago and they found out I was drug resistant to all sz. meds out on the market right now so I started taking vitamin B12 once a day and that has reduced my
    sz. greatly. Here's wishing you and your daughter only the best and May God Bless You Both!

    Sue

  3. #3

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    Hi Sue ,
    At times like this we are so thankful for modern technology, ,but when you want it to work for something like seizures they have so much to study yet. But they have come along way on DNA testing ... Found two very rare diseases that my daughter has on top of seizures. I asked once about DNA testing for the right AED I was told no .. humm ... I will have to ask the new neuro. My daughter is on one old school yet famous phenobarbital at high doses. well 42.4 level seems to control seizures for the most during the day ,but at night she has them all night long ... Oh and Vimpat small dose and I feel it does nothing ,but mess with her white blood counts . I'm so glad Vitamin B12 works for you !! Ha , Ha , Ha for her vitamin B12 she is testing to high on it or she doesn't have enough with our new disease Autoimmune hematologic anemia. If they can get that under control maybe we could get a real good look to where for vitamin B12 level is at!! But still what a fantastic thing to ask hematology anyway... We have him working hard for the money we pay him . lol I still praise God for everyday and the blessing he has given me ! He truly is Good !!! We had talk about the VNS but at this time with my daughters immune system so weak from Autoimmune hematologic anemia sticking a devise into her could just lead to more infection .. and if I knew this would be a 90% chance it would work and we didn't have to take AED'S with it ...Well hot diggy dog !!! we would have had it put in yesterday .I will stand by this decision. Thanks for listening ,and I also wish you well and many blessing for the day !!! Trust in the Lord with your whole heart ! Sue
    Last edited by suelove60; 07-27-2013 at 04:59 AM.

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