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Thread: Keppra/Vimpat: Increased Seizures Part II

  1. #11
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Still Wating for GTube

    ((((((HUGS TO ALL))))))

    Lisa ~ Thank you for your insight. You made complete sense, as always! That is a method I've used to discern a seizure too. I think the movements slowed while B's mom was holding him. We didn't have a chance to revisit that concern today, as our conversations are so brief, and we have to cram so much into them.


    This morning, B was taken to radiology, and a radiologist placed the NG tube for Bryan, while x-raying him. The barium will be put into his NG tube tonight. Neither B's mom nor I can figure out why they are doing this. My boys didn't have any of this done for their G Tube placement. The GI put a scope down their throats with a camera, found the right place for the tube, made a 1/2 inch incision on the belly, and stuck in the tube.

    Now, B's mom is being told again that the radiologist will perform the Gtube procedure, and no GI will be involved. When she asks, "Why?" they just tell her that's the way they do it now.

    B is off the Vimpat now. Some doctor made that decision, and B's mom just found out. But B's seizures are subsiding, to a manageable level, on 500 mg Keppra twice a day.

    And that's the dose that he was taking, before the status began.

    'Tis a familiar mystery.

    The plan is for GTube placement in the morning. Then, he will start getting formula, and the dietitian will set up a plan for home care.

    I'm hoping that B can bust out of there by Friday.

    Thank you for your continued prayers and support. B's mom and I truly appreciate you!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  2. #12
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    Oh gee, I will continue to pray! I have never heard of barium testing for placement of a Gtube. This sounds like the docs are not communicating well with the Mum. That's very worrying. Please tell your friend that fellow Moms are praying for her. x Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  3. #13
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    What a nightmare! I pray they can get the g-tube in and send B home to recover. No one should have to go through all of this. It's been eight years since Tyler got his g-tube and he had a surgeon, spent 2 hours in surgery and a week in the hospital. Things have certainly changed. They are streamlining everything to save costs. Thank you for updating us Rose. Our thoughts and prayers are with your friend and B.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  4. #14
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up G Tube Is In!

    ((((((Donna & Tamie))))))

    Thank you so much for your prayers!

    B's G Tube was placed today, by a radiologist in the OR, after which he was transferred to a recovery unit (where Jon had his trache changed in 2009), then returned to his room. He will likely need to remain in the hospital for a few days, since the introduction of formula via pump will be started at the lowest rate of 10 cc/hour. Plus, B's mom needs to be trained in using the G Tube.

    B has a low profile PEG, which is only about 3 inches long. My boys' PEGs were a foot long! I don't know whether he has a balloon or a mushroom cap.

    B has a pressure bandage across his abdomen. Michael had this when he had his G Tube placed, but Jon did not.

    B's procedure took about an hour. My boys were in and out in 30 minutes.

    B had barium. My boys didn't. B's procedure was performed by a radiologist. A GI placed my boys' tubes.

    The differences surprise and confound me.

    Of concern is B's constant sweating. B's mom asked the doctor about it, and he said that it will be addressed, once he's recovered from the G Tube procedure. I don't quite know what that means, unless it is related to malnutrition.

    B's mom told me that she's trying to wrap her mind around B's G Tube and the reality is a bit challenging. I know. I assured her that we all felt that way initially, but in time, she will be an expert and wonder what all the fuss was about.

    She is breathing a sigh of relief that it's in, and it's over.

    Thank you again for your prayers, love and support. B's mom is very grateful. And so am I.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Oh, thank God it's in and so far so good. Yes, your friend will soon realize that this 'plumbing appliance' is a blessing. A big one. Prayers for continued improvement and hope that the lad doesn't get more dehydrated from sweating. x Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    ((((((Thank You))))))

    Donna, thank you for your prayers. B's mom expected B to be discharged today, with a home health nurse to get her set up with the feeding pump and answer her questions. I haven't heard from her, so I hope it went well.

    I told B's mom to call our primary care physician to discuss B's sweating, since it was not addressed properly in the hospital by the doctors. Is he sweating from Keppra (he's off of Vimpat)? From malnutrition? From the blood thinner they give as protocol/prophylactic in the hospital? Withdrawal from the Ativan? (He was given far too much Ativan in my opinion.) Is he seizing, and whatever movements she sees are actually seizures? SOMETHING is causing B to sweat profusely. What is it?! That's the doctor's job, and I'm very sorry that he didn't address it, when B's mum asked repeatedly.

    I'm still shaking my head in sadness at the doctor, who told B's mom that B had no quality of life, and she should forego the G Tube and let him die. All of this is out of character with our experiences with Jon at this hospital.

    We just continue to pray that the nutrition he receives through the G Tube will return him to health, so he can battle his seizures. Thank you for joining in those prayers, my friend.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Hmmm, some good, some still worrying. Keep us all posted, Rose! Prayers still going up for your friend and her dear son. Hope the feeding goes OK and maybe that the sweats stop with hydration and nutrition. xo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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