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Thread: Keppra and Increased Seizures

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    Question Keppra and Increased Seizures

    ((((((Hugs to All))))))

    A dear friend of ours called this morning to ask my advice regarding her son, B, who is in his late 30's and has developmental disabilities. He and Michael were classmates, bus-mates, and best buds.

    B has had a seizure disorder for most of his life. He is taking Keppra, which he began a year or two ago. He is on no other meds.

    B started having cluster seizures last weekend, out of the blue, for no apparent reason. Every 5 - 10 minutes or so, he is seizing for 30-45 seconds. B's mom took B to see his neuro, but B stopped seizing (naturally) while they were at the appointment. The neuro offered her no help. As soon as she got B back in the van, the seizures returned.

    She ended up taking B to the ER. B was given an Ativan injection, which put B to sleep. But when he woke up, he was still seizing. The on-call neuro was contacted, and he told her to increase B's Keppra from 250 mg every 12 hours to 500 mg every 12 hours. Doubling the dose.

    B's mom took B home, increased his Keppra as instructed, but the seizures haven't stopped.

    When B is upright, he seizes less than when he is laying down or prone.

    The constant seizing has prevented B from being able to eat or drink, so he is dehydrated and under nourished. At the ER, B was given IV fluids and catheterized, but he produced very little urine, and he only got 5 hours worth of IV fluids.

    Blood work up in the ER was essentially normal, no evidence of infection. But they did not test for his Keppra level!

    B's mom had a call into B's neuro and intended to keep calling until he responded to her.

    I think B is and has been in status for days now. The response of the neuro and the ER baffles me. I think B needs to be admitted and thoroughly assessed to determine what is causing these sudden seizures, so they can be stopped. It may mean a different seizure med. He needs to be observed.

    One of the more serious side effects listed for Keppra is increased or different seizures. B is experiencing both of these things. So, could the Keppra be the culprit?

    My suggestions were: get a Keppra blood level and test his thyroid; get an EEG and a CAT scan (to rule out tumor/cyst/bleed), get him on IV fluids, monitor his urine output. He needs to be hooked up to a monitor to follow his vitals.

    If you have any experience with Keppra, or with a seizure med causing an increase/change in seizures, or any other insight to provide, please share it with me so I can help B and his mom. She is on her last legs, just exhausted, stressed, and frightened for her precious son.

    Thank you so much ~

    Love & Light,

    Rose

    (PS ~ Posting this in the Epilepsy forum also)
    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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    Hi Rose. Tyler was put on Keppra when he was about 6. Nasty drug. The higher the dose went, the more zombie-like Tyler became and the worse the seizures got. It reached a point that Tyler lost ALL of his abilities and we knew if we continued on this drug, Tyler would eventually simply forget to breath. He couldn't lift his head, he stopped walking in his pony walker, stopped smiling, could barely swallow his food without choking. It was awful. At that time, there was no blood work done to check on levels. There is also something called the "Keppra rage", which Tyler never developed, but I know many children that did. They became like wild animals on this drug. Not my favorite of all the drugs Tyler has failed. On many of the drugs we tried (20 in all), the higher the dose, the worse his seizures got. We walked a very fine line in seizure control. Hope your friend's son improves and the seizures stop.
    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."

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    Gosh I have no experience with seizure meds but my heart goes out to your friend and her son. It's awful to be "patted on the head" and sent home with no real answers. It's also hard to know what to say and do at the time so maybe after your great advice she can take him back to the ER and stand her ground and insist he get the care and observations needed. What you have suggested sounds perfectly reasonable. I pray she can get answers and the help her son needs.
    Mary Grace

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    ((((((Tamie))))))

    Thank you for sharing your experience with Keppra. That does sound awful. Poor Tyler. Klonopin did the same thing to Michael (that was years before Keppra was invented). So, is Keppra a drug, for which levels aren't drawn? There is no therapeutic range? I'm not used to that, because Jon's and Michael's meds have ranges and require periodic blood draws for checking their levels in the blood stream.

    How are you and Tyler? Would love an update on both of you.

    ((((((Mary))))))))

    Yes, it's dreadful that B and his mom were sent home with no answers.

    Thank you both for your good thoughts and prayers for B and his mom.

    Here's the Update on B:

    B's mom took B to ER this morning. This time she took him to "our" hospital (where we take Jon), for which I'm grateful, because I know he will get excellent care there.

    She called me from the ER, stating that the on-call neuro (a new doc, whom Jon has never seen ~ he's seen most of them) had advised over the phone giving Dilantin to B. B's mom was worried about Dilantin side effects. I assured her that those generally occur over long term use (as with my boys), and that the preferred drug for stopping status is typically a loading dose of Dilantin. I told her to consider it, if that was the neuro's suggestion.

    B had already been given 3 mg of Ativan. He was sleeping, as it knocked him out. The neuro hadn't been in to see B yet, so I told her to ask the nurse if the neuro would be in to examine B.

    At that point, the ER nurse came in and told B's mom that B was being admitted. Whew! Finally!

    B's mom asked the nurse about drawing blood for a Keppra level, and the nurse replied that it was "too early," possibly meaning that Mom had just given B 1000 mg (per B's neuro from the other hospital) of Keppra a few hours earlier. The other neuro, who is B's regular neuro, is essentially approaching B's situation with "keep increasing the Keppra dosage." And nothing more. I have a few names for this doc, but I'll keep them to myself.

    I told B's mom that it was good that B is being admitted, because he needs a complete evaluation, and he will definitely get it there. We also have superior nurses, particularly in ICU and the Step Down unit, where I'm guessing B will end up.

    B had already had a CAT scan, which the other hospital didn't do the other day. Just because he has DD and a seizure disorder doesn't mean that he can't also have a tumor! So I was pleased to hear that they were on his case, as I expected they would be.

    Since B has been healthy thankfully for many years, the hospital setting is strange to B's mom. The hospital is practically our second home and extended family, so I tried to prepare B's mom for what would happen next ~ the questions, the endless questions, from nurses and docs; the patient history, the long and wearing patient history; the hustle and bustle before you get settled in and the loud noises and constant beeping.

    I also mentioned to her that the doc might want to feed B a formula via a nasal tube, and that she needs to consider doing that, since B only weighs 70 pounds! He is a small young man, but 70 lbs is malnourished. Not the mom's fault, of course, as she feeds B a great diet of organic food.

    I emailed our fabulous hospital dietitian today to let her know about B, and she replied that she was leaving today on maternity leave! That was delightful news, as she will be a terrific mommy. But she is giving the heads up to her coworkers, who will be taking care of B. That's the second best thing to having her.

    My guess is that some or many docs are going to suggest a Gtube for B, so I'm gearing up with my best advice on that subject when/if that subject arises. Knowing these docs, it will.

    It's so very scary. B is in the best place right now, and I have faith that the docs and nurses and professional staff will do all that they can for him.

    All prayers are appreciated ~ thank 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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    Sounds like your friend is where she belongs with her son. Amazing the difference in hospitals. If a g-tube is suggested, your friend is more than welcome to talk to me. We refused for 10 years every time it was suggested and now have no idea how we could do without it. Tyler has thrived since the g-tube was put in. I never have to worry about him aspirating on his food or liquids, never have a problem giving him meds or keeping him hydrated. I make all his food and use a 12" extension and a 60 ml syringe to feed him a blended diet daily. No muss, no fuss, no bother. He gets what he needs and we eliminated a world of stress. Win, win. Sure hope they get some answers and the young man is soon home where he belongs.

    Tyler has been very stable for the past three months. No UTI's, which is wonderful. I leave for South Carolina in a few weeks to see Tyler's mom and siblings. Looking forward to seeing my daughter and grandchildren.
    Last edited by Tamie; 03-08-2013 at 06:54 PM.
    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."

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    ((((((Tamie & Tyler))))))

    What great news to hear that Tyler is stable. Isn't it wonderful? I know. It's like a vacation in a way. May it continue to be so for Tyler for a long, long time.

    And how terrific that you are getting a chance to visit your daughter and grandchildren! That's also great news! I'm sure that will be very healing for you.

    Thank you for offering to help B's mom with the Gtube decision. We waited too long for Michael, so I can totally relate to your experience with Tyler. I feared it, because I didn't know anything about it. But when it came time to make that decision for Jon, I did not hesitate. I knew it was time, and I knew it would help him, which it has.

    I so envy you and Tyler that Tyler has a blenderized diet. I wish that Jon could manage it. We tried and failed. I know the formula isn't the best thing for him, but we have no other options.

    B's mom is meticulous about B's food/diet. I know that she would immediately go for the blended diet, but she will need guidance. I will add you to the resource list for her. I'm kind of useless there, as our attempt failed.

    And, you are so right about the differences in hospitals, especially since they are in the same system. I'll let you guess which two they are, since I don't want to name names. I'm just so grateful that our hospital is as aggressive as it is. They never give up on patients, at least that's been my experience, and what I've observed the millions of times we've been there. And everyone there is always kind and compassionate, from the cafeteria folks to the valets to the nursing supervisors and patient reps. Most doctors are too, but some need a little bedside manner refresher courses.

    When Jon came in with his seizure last June, a CAT scan was ordered immediately. I asked if that was really necessary, and the answer was: "Seizure-CAT scan. Protocol." And that is a good thing to rule out any head trauma or tumor or bleed. It also prevents lawsuits.

    What if B's CAT scan shows something? Is the other hospital/doctor liable for not ordering a CAT scan to detect/rule out that something? Maybe. Always better to CYA, eh?

    Thanks again for your good thoughts and prayers. I know you understand exactly how B's mom is feeling right now. Exhausted, frightened, and helpless, and confused, and trying to sort out all of the medical stuff coming at her from all directions. She isn't used to it, thankfully, since B has been quite healthy. And she is a senior citizen, caring for B on her own, so it's even more stressful for her. No one to come in to stay with B to relieve her, so she can get some rest, or food, or a shower and change of clothes. And she will stay with B, at his bedside, for as long as he is hospitalized. She is so devoted to him.

    Praying for continued good health for you and Tyler.

    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 03-08-2013 at 08:46 PM.
    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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    Default Vimpat Added to Keppra

    ((((((HUGS to All))))))

    B is in the Step Down unit, where the nursing/patient ratio is 1:2. It's just a step below ICU.

    He is on oxygen via nasal canula. He is being given an antibiotic prophylactically.

    He is still seizing, so he is receiving Ativan on a regular basis, which puts him to sleep. Not a drug induced coma at this point.

    His hospital neuro has treated Jon during Jon's hospital stays since 2009. He's young, enthusiastic, and smart. B's mom said that he is listening to her and her concerns, and that he has been very compassionate toward her and B.

    He started B on Vimpat today, and he increased the Keppra to 750 mg 3 times a day, up from 500 twice a day.

    CAT scan was clear. B had an EEG today.

    B's blood pressure is low, and while I was talking to B's mom this morning, a nurse came in to give B a bolus of water via IV, because B's blood pressure was 76/48. WAY TOO LOW! I explained to B's mom what the bolus process is, then told her that if he needs medication to elevate his BP, he might be transferred to ICU. I didn't want her to panic. That is hospital protocol.

    B's mom is very pleased with the attention and care B is receiving. She also said that everyone is being kind and caring toward her. I told her to ask for a bed chair, so that she can lay down tonight to get some sleep. She doesn't want to bother anyone! That's not a bother. That's part of their job. She isn't sleeping at all, and this is not good! She said, "it's always day time here, because it's so noisy at night." Yep.

    B's mom told the neuro that she didn't want B overmedicated to the point of being a zombie or asleep all of the time. She said, "If he has to be knocked out all the time, because he seizes whenever he's awake, then why is he living? He's not living, if he is like that. That isn't life for him." She said the neuro responded that he understood and that he would do everything he could to stop the seizures and bring B back to his usual functioning state.

    B's mom and I have been friends for nearly 30 years. We've been through so many crises together, so many battles with the system together, so many conversations, where we both just lose it and start weeping. We've been known to curse like sailors on occasion, when the system has really perturbed us. And we've been known to laugh so hard that our sides ache.

    I know exactly how she feels right now, and I am living this crisis with her. My heart is breaking for her and for her beautiful, courageous son.

    Thank you for any prayers you might send their way ~

    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 wow, that is so sad! Caitlin was on keppra and from day 1, she had keppra rage...unfortuantely they kept telling me it would go away and for 6 months we dealt with it until finally the dr saw Caitlin's behavior at an appoitment. I pray that your friend's son stops seizing and that the vimpat works out. C was on that too and it worked good for awhile (until her brain adapted) with no side effects. Glad 'B' is at the good hospital getting good care!!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    ((((((Lisa))))))

    I knew that Caitlin had been on Keppra and Vimpat and was hoping you might have some advice.

    B hasn't had the Keppra rage thankfully, but his dose was so low, that may have been a factor. His Keppra has been increased from 500 mg/day to 2250 mg/day. Quite an increase there. It may be adjusted once the seizures stop.

    Grant is on Vimpat, isn't he? He's had great results with it as I recall. I'm glad that Caitlin didn't have adverse side effects to it.

    Thank you so much for your prayers.

    How is Logy feeling? Have you run out of popsicles yet? How is Caitlin feeling? Are you going to make it to your Scrapbook getaway?

    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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    My dear Rose, I am going to church in a few minutes and will pray for your friend's son. Nicholas was on Keppra in England but when we moved back to Canada, we found that it wasn't a drug that was covered (it's very expensive!) and so we switched to valproic. The neuro said that if the valproic didn't work, we would move to Vimpat, but we haven't needed to do that yet. Keppra was fine for Nicholas - no rage. This sounds very serious for your friend and it is clear that her young man is very, very loved. I will pray. xoDonna
    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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