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Thread: Keppra and Increased Seizures

  1. #31
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    So glad to hear B is at home where he belongs. Your friend is 70, has she made arrangements for B if something happens to her? That scares me to death with Tyler. Like you with Jon, we hope to outlive Tyler (even though he is our grandson) cause we don't know what would happen to him if we don't. Our daughter isn't equipped to take him and I know his father isn't capable of taking care of him. Very worrisome.
    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."

  2. #32
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    Thank you for the update. I'm so glad that B got to go home and that mom was backed up by the neuro. What horrible stories to hear. Is the hospital comparable to a rehabilitation hospital? I've heard some aweful stories about a few in our area. We were lucky when Kathleen was in one she was their very first pediatric patient to their new pediatric floor. She ahd a whole staff at her feet waiting to help. I hope mom is getting a little rest and taking good care of herself. Please let her know that we will continue prayers for her and aher son.
    Mary Grace

  3. #33
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((THANK YOU ALL))))))

    Like all of you, I'm concerned about B's mom and her lack of sleep and rest. She sleeps, when B sleeps, at night, but she gets up frequently to check him, and to change his diaper, if he's wet (she has an ingenious system, which doesn't disturb B's sleep).

    She has not had a good night's sleep in 38 years! She is permanently sleep deprived.

    I can relate to this, because so am I. When I can get 5 hours of straight sleep, I feel like I've had a vacation. My body is programmed to wake up at 2:30 a.m., because Michael frequently seized at that time. You might think that that would fade in the 10 years since his passing, but it has not.

    So, her body is used to sleeping a couple of hours, getting up, then going back to bed and sleeping an hour or two, getting up, etc. But she isn't used to sleeping in a chair in the hospital, nor staying awake day after day, and battling the stress of a major crisis. (I am, unfortunately. Close to a hundred -- I stopped counting years ago -- hospitalizations between my two boys from birth to now. By the time each of them turned 2 years old, they each had been hospitalized 9 times. That's 18 hospitalizations in about 4+ years.)

    When her niece was advocating for B's discharge, she pointed to B's mom and said to the neuro, "Look at her: No sleep, no shower, no change of clothes for 2 days. She's exhausted, and this place is wearing her out. At home, she can care for him in his own environment. She can get the rest she needs."

    So, now, I am praying that she can catch up, and get back into her routine.

    Lisa ~ Yes, the lack of bed rails really astonishes me, because our hospital is a stickler about the rails being up, even when we are beside him. I thought bed rails were a required precaution on all hospital beds! I wouldn't have tolerated it. I would have insisted on bed rails, and if they didn't provide them, I'd be talking to the nursing supervisor, the patient advocate, and/or the head of the hospital, and I would say, "I have a great lawyer (which I do), and he's itching for a big case."

    I don't use that phrase, unless things are really bad. But the words, "I have a great lawyer," always get attention PDQ.

    I also think that my cell phone camera would get a really good work out at this ACH. I would photograph every thing, the filthy bed, the one wash basin, the lack of bed rails. I would keep notes and document everything. And I would write a scathing letter, and it would make the rounds. Too bad that I can't work undercover to expose this rat hole. But I'll never see the inside of the place, because Jon will never go there, nor will Jim or I. I told Jim, "Bring me home and fill me with morphine."

    B's roommate is a 97 year old man. His 94 year old wife questioned the doc, "Why is he getting antibiotics? He broke his leg." B's mom overhead this exchange of course. The doc said, "It's to prevent infection."

    This is horrible medicine! Overuse of antibiotics is one of the reasons why we have Super Bugs!

    Once again ~ we're never ever going to go there for any reason.

    Donna ~ B's mom and I go way way back, and we've been through a lot together. We've gone to meetings to protest assorted problems with The System, we got fingerprinted together a couple of years ago, when the state changed the requirements for background checks on IHSS care providers (and we've been in IHSS for 25 years, and should have been grandfathered in, but we had fun that day anyway), fair hearings against the school district and the IHSS, and the list goes on. Our boys are in the same programs, share the same doctor(s), and we keep each other abreast of any changes occurring to us, which might affect the other.

    But the whole hospitalization deal is unfamiliar to B's mom, because, thanks to her impeccable care, he has been generally healthy for decades. This is where she needed my expertise, because, well, sadly, I'm an expert in hospitals.

    I told Jim yesterday that every day, I wished that I could clone myself, so I could be there with her. I would have tried not to take over! But she would have allowed me to do that. Several times while B was at our hospital, she handed the phone to the nurse or therapist, and asked, "Would you explain this to my friend? She's helping me to understand all of this."

    But she is keen and discerning, clever, and completely devoted to her son, and she handles many issues with finesse and aplomb.

    Tamie ~ I'm scared too about Jonathan outliving us, although we have a plan in our heads, which we've yet to implement. We do have a great lawyer, and we have wonderful friends, who would do everything that they could to ensure that Jon stayed in our home with full time care, which they would supervise. It's unlikely that Jim and I would die at the same time, so one of us would remain to care for Jon and would likely need to hire an assistant. At that point, the troops would be gathered, and a plan would be in place to protect Jon, when the other one of us dies.

    B's mom has a special needs trust, and she has an extended family, who would work together to provide his care.

    B's mom takes excellent care of herself and sees her docs regularly, gets all of her tests, etc. because she has Medicare. You would never estimate her age to be 70, because she looks 50. She looks younger than me. Sigh ...

    Mary Grace ~ The hospital is referred to as "Acute Care," but it is similar to a rehab hospital. It has about 4-5 patients on vents, as well as elderly patients with assorted ailments. And I am confident that these patients could get better care at home, at less cost, with a full time nurse day and night, than they are getting in this "hospital." Even the vent patients! There is nothing good or positive to say about this ACH.

    I'm so glad that Kathleen received good care. It's nice to hear a positive story for a change.

    Thank you all again for your thoughts, prayers, and support for B and his mom. They are truly grateful. And I am too.

    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.

  4. #34

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    I was given the generic keppra in 2011 as the doses increased, I had 3 gran male within a 7 month period. Prior to this time, I was treated with dilantin, over a 20 year span the only time I had seizures was during a doctor lowering of my dose below my therapeutic range.This was for various reasons., to wean for newer aeds, , to try to wean and go med free etc.. I dont think the clustering of seizure events when starting keppra was a coincidence as the new doctor told me. I am now on topamax and so far it is working. I only hope that I am right about keppra, I know that It depletes the body of b6, messes up the kidneys and causes anxiety issues etc.

  5. #35
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    ((((((judy56))))))

    Welcome to Brain Talk and Child Neurology (or CN or CN2, as we affectionately refer to our home here at BT -- Brain Talk)!

    Thank you for sharing your experience with Keppra. My friend's son is now stable on a lowered dose. I agree with you that your experience wasn't a coincidence. One of the listed side effects for Keppra is increased and/or different kinds of seizures.

    I'm glad the Topamax is working for you, and I send a prayer that it continues to do so.

    Hope you'll make yourself at home here on Brain Talk. I look forward to getting to know 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.

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