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Thread: Keppra and Increased Seizures

  1. #11
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Yes, Grant is on vimpat (I am assuming still is). Logy is totally back to normal and so is Caitlin, which helped me to be able to relax and enjoy the weekend away. I got a ton completed! (26 pages which is above my average....I talk a lot at these things too, lol!) There were about 25 ladies that attended, many of the same from year to year so it's fun to catch up. Anyway! Scary how fast they increased B's keppra...that was something that bothered me when C was on it. I would bring up the issues we were seeing and they would just say, oh well, let's give a higher dose, which of course just made it worse. It's like the doctors just dismissed everything I would say. We had exactly the same thing happen when C was on topamax too...she had even worse rages on that which the doctors just completely blew off. I hope that isn't happening to your friend (that drs are just blindly increasing). Continuing prayers that her son will improve!!

    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!!

  2. #12
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    ((((((Donna))))))

    Thank you so much for your prayers. B is indeed very loved. He has a large family of aunts/uncles/cousins, and they are all coming to visit him and his mom, which is good on one hand, but on the other hand, visitors can be exhausting.

    B's mom hasn't had more than an hour sleep each day for a week now, and I'm worrying about her. She revealed to me today that she is 70! I can't believe it! She said, "I was 49 for 10 years."

    Thank you for your Keppra experience. I am concerned about its efficacy for B. The neuro told B's mom that their only option is to keep trying one drug to see if it works, then switch to another drug, if it doesn't.

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

    After I asked you about Logy, Caitlin, and your weekend, I checked your thread on Logy and read your update! Then, I had to check Jon and didn't get a chance to reply. I'm so glad you had a good weekend, got a lot accomplished, had a MASSAGE!, and laughed and enjoyed yourself.

    The reason for the major increase in the Keppra is that B is in status. He hasn't stopped seizing for 8 days now. He was sleeping during his EEG yesterday, and the results showed that he was seizing while he was sleeping.

    While B's mom and I were chatting this morning on the phone, the hospitalist came in to speak to her. He told her that they can't just keep loading up B with Ativan. It will lose its effectiveness, and it will keep him in a sedated state. It also lowers his blood pressure, and it can compromise the respiratory system. They want to see whether the Keppra and Vimpat are going to work, so unless B gets into serious distress, Ativan is off the table now.

    B's mom said that B is sleeping more peacefully now, and that the intensity of his seizures seems to have lessened. It is a wait and see, take it day by day situation.

    So, I don't think that they are blindly increasing the Keppra. I think that they are recognizing that the low dose he was on kept his seizures to a minimum for 3 years, but the status he is in demands an increased dose quickly.

    My concern is that he is very small boned, small in stature, and he only weighs 70 pounds. Too much medication could easily become toxic for him. But I'm trusting that they are giving all of that consideration, as well as the fact that he has basically had no nutrition for over a week. Food will probably be addressed tomorrow by the Speech Pathologist, who will conduct a swallow study, and the dietitian, who will recommend a diet, an NG tube or Gtube formula, depending upon the findings of the SP.

    B's mom and I had a conversation about aspiration pneumonia today. She wants to feed him, if he can swallow. My concern is that he won't be able to get enough nutrition, if he is seizing intermittently, while she's trying to feed him orally. Plus the fear that he seizes, while he swallows. We need to get nutrients into him soon, and I've suggested that an NG tube is the safest and most expedient way to do that right now.

    Thank you so much for your prayers.

    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.

  3. #13
    Distinguished Community Member andromeda31's Avatar
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    Hi-

    Oh wow, I think I had missed reading that he was still in status...can they give him TPN (feed thru the IV) to get him some nutrition until he comes out of it? Caitlin had that when she was in the NICU. I have to share, I agree that visitors are exhausting and I usually strongly discourage people from coming, but once when Caitlin was in long-term for a shunt infection, the most awesome visit we had was when her teacher & aide drove (2hrs) to the hospital and when they got there.....they made me leave! :) They told me to take a break, go to the mall, get lunch...I had a 2 hr break! I hope that your friend's family can do something like that for her, even if they can just sit in the room with him so she can sneak a nap in a nearby waiting room or something. BTW, C's teacher & aide are great and I totally trusted them to stay with her...and she was stable at the time so I felt ok leaving the hospital. Sending prayers for improvement!

    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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    Rose I will continue prayers for your dear friend and her son. it's so hard to see your child in crisis and feel so helpless. I remember times with kathleen after her strokes knowing that all we had was prayer. It was very reasuring to know that I was not the only one praying. I hope your friend can feel the good thoughts and prayers being sent their way.
    Mary Grace

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

    Thank you to all, who might be reading this thread and joining in prayer for B and his mom.

    No update today. I told B to call me, when it is best for her, because I know the thousands of interruptions in the hospital. I also know how exhausted she is, and if she has a moment to close her eyes, I don't want to disturb her. I'm sure she would call me if there was a major change, or if she had a question.

    Lisa ~ Yes, B has been seizing incessantly for 9 days now. I pray that today the seizures are subsiding or at least slowing down. He must be in so much physical discomfort from all of that tensing. Doctors were worried that he might tear a muscle or break a bone. He is quite fragile and frail, albeit generally healthy overall.

    Thank you for sharing that lovely story. How wonderful of the teacher and aide to drive so far to give you some respite. Very kind and caring of them to be there for you and Caitlin.

    I'm not sure whether her family stayed with B so she could take a break. As B's mom described it, the family sort of descended upon Bryan's room in a swarm, then came in two at a time to visit. They like to talk. One person was there from 11 a.m. to 7:30 p.m. And that's just too much.

    But I have commanded B's mom to take an hour break in the afternoon to go to the chapel, light a candle, then sit in the chapel garden, where it's quiet, peaceful, and secluded. She needs to be outside in fresh air with sunlight on her shoulders. She needs to be away from the noise and chaos. An hour does wonders for me. Plus, it's a long walk down the corridor to get to/from the chapel, so that is exercise.

    Mary ~ Oh it is the most difficult thing to stand there helpless, while your child suffers, you are so right. Like you, I always feel comforted knowing others are praying with and for us. I have notified all of our friends, so we're all praying, along with the prayers from you all. And B's mom is very grateful to all of you/us for those prayers. I know that she has said many for my boys through the years.

    It always helps to know you are not alone.

    Thank you again, everyone, for your prayers.

    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.

  6. #16
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    Default Seizures Lessening; NG Tube Placed for Feeding

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

    As I expected, B failed the bedside swallow study, and the Speech Pathologist recommended placement of a nasal gastric (NG) tube today.

    The SP discussed feeding issues at length with B's mom, who said to me, "I've been doing everything wrong with the way I have been feeding him." B's mom said that when she thought B was swallowing, he wasn't.

    The SP, who diagnosed Jon's delayed swallow, actually had me listen to Jon's throat with a stethoscope to hear the swallow. I learned how to wait for him to swallow twice after each bite. But that takes forever and a day to feed a meal!

    Miraculously, B has never aspirated, and he doesn't have pneumonia now. So I told B's mom, "you must have been doing something right when you were feeding him!"

    Although he doesn't have pneumonia, B is receiving breathing treatments. He was having one, while his mom and I talked on the phone. The RT said it is to keep his lungs open. Maybe it's to prevent pneumonia? I don't know. My boys always have had pneumonia when they've been in the hospital. But I would guess, because he isn't moving around much, and he's been sedated and is still seizing, that pneumonia is a very real possibility.

    B is also receiving IV Vancomycin as a prophylactic against MRSA. I explained all about MRSA to B's mom. It's everywhere we are, on every surface we touch. The majority of the population is colonized for MRSA. When illness strikes, that's when it activates. I'll bet most of us here on CN, and even on BT, are colonized for MRSA, because we have spent so much time in medical settings, like doctor's offices, labs and testing, and hospitals.

    B's mom reported that B's seizures are less frequent and less violent. This is a blessing.

    She also said that within minutes of receiving the Vimpat, B falls asleep. Has anyone else here had that experience with Vimpat?

    He must be getting his Vimpat through IV, since he doesn't have a GTube and just got the NG tube today, and he can't swallow, so he can't have it orally. Perhaps that would be the reason for him falling asleep as soon as he gets it.

    I strongly suspect that the doctor(s) will recommend a G Tube for B. When I mentioned it to B's mom, she asked, "Is that the tube in the stomach?" When I said, "Yes," she said firmly, "I don't want that."

    So, I took her on a brief journey of Michael's G tube decision, and how I wished that I had made it years before I did, and with that knowledge, it was easier to decide to have one placed for Jon.

    I gave her all of the assurances and a brief overview of the Gtube and it's purpose. I told her she could feed him real food through the Gtube, and ensure that he got all of his nutrition, hydration, and meds, regardless of his condition. While he sleeps, if he's ill, even in between seizures.

    I told her that it will make her life easier and his life better. I planted the seed, and I reminded her that I would never ever suggest anything that wouldn't be good for him and easy for her to manage. She knows that. But that first time facing the Gtube is disheartening, especially if you don't have the facts from someone, who knows, which I didn't. I thought it was a long surgery, and that it would get infected, and ... you know all the stuff we think about these things.

    B's mom asked me to thank all of you for your information and for your prayers. 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.

  7. #17
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    Thanks for the update Rose. With Tyler, having a g-tube seemed too unnatural and made him seem even sicker, feeding him was something positive that made him more normal, and I didn't want anything else taken away from him. We said no for all the wrong reasons. Getting hit in the face with the pictures of his stomach and esophagus raw and bleeding from silent reflux and realizing how easily he could have choked to death was a real wakeup call for all of us. Now I just think of his mic button as his mouth and the tube as his esophagus. He still gets good food without the risk. We had to change our mindset, and that took 10 years to do. Not an easy decision for anyone. Hope this young man heals soon and his mom gets some much needed rest.
    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."

  8. #18
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    ((((((Tamie))))))

    It's safe to say that the Gtube saved Tyler's life, and improved the quality of his life, isn't it? I know. The same is true for my boys.

    And I can relate to everything you wrote, as that was how we felt about Michael's Gtube. Eating orally was his last normal thing in life, and he (and Jon) always loved to eat and had huge appetites. But, when oral intake becomes a life-threatening activity, it's time to choose the Gtube.

    That fact is difficult to face, as we all know. It's just so ... medical. And it is even more difficult, when you don't have facts, awareness, the experience of others to help you comprehend it.

    I recall observing a very young student at Michael's school receiving her Gtube formula, and I thought, "I'm so grateful that my boys don't need that. It looks dreadful and scary." This was maybe 10 years before Michael had his Gtube. I knew nothing, and I didn't inquire. That was foolish, since it caused me to delay that decision for Michael, and he suffered as a result.

    For quite a few years, I have felt that B would benefit from a Gtube. But he's been fairly healthy and hasn't had any issues with swallowing until now. I have never mentioned it as an option for B, until now, and I expected her reaction.

    She asked whether B could go out, like to visit or to the doctor's office, with a Gtube. I explained to her that it isn't a limiting thing at all, except in Jon's case, he is tied to it for 18 hours, and that is limiting. He can't handle bolus feeding, so that is limiting. And he has quite a few other health issues, which restrict him in some ways.

    She was truly shocked when she learned about Bryan's swallow, and she sees how thin he is, and realizes he went 9 days without nutrition, and she is adamant about nutrition for him, serving him only organic food, which she has learned through the years do not trigger seizures for him. I think that she will come around to realize that a Gtube is a good idea, just like you and I did. And like us, it is taking a crisis to convince her.

    Looking for the positive side in this crisis, I am thinking that B is getting a thorough work up, from head to toe, being seen by specialists and therapists, that would never happen in a doctor's office. They don't leave any stone unturned, which is why I like our hospital. And every visit is an education. So, she is learning things about B now that she didn't know, which will help her provide him with better care. She's also learning medical procedures, protocol, terminology, and this is all overwhelming to her now, but it will be so helpful to her in the future.

    It is such a blessing that Tyler can have real food. How I wish Jon could tolerate it. That makes is so much more normal than the formula pumping 18 hours a day.

    Thank you for your good thoughts! When are you taking your trip? Hope you have a fabulous time.

    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.

  9. #19
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    Default Kicked Out of Hospital

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

    B's mom called this afternoon, frantic at the news from B's hospitalist and nurse that B has to be transferred to an acute care hospital.

    B is on Medicare, because his mom is on Medicare, and evidently Medicare only pays for one week of acute care in a major hospital. After that one week, it's off to an acute care hospital, for which they will pay.

    I am familiar with the one to which B will be transferred, as our dear friend and neighbor was there several times a few years ago, before he passed. He had dialysis, a defibrillator, diabetes, wound care for an amputated foot. He went back and forth from hospital to the acute care hospital.

    Our friend sang the praises of the hospital and nursing staff, and he certainly had plenty of experience in a variety of hospitals during his life.

    This one is 48-bed, and they serve patients with acute needs only. It's like a Step Down Unit. Out of ICU, into Step Down, then onto a regular medical floor once stable, then home. But, if Step Down care is required for more than a week, the acute care hospital is the destination.

    This hospital was recommended for Jon in 2009. I said no, obviously, sight unseen. But my reasons were valid and proved to be correct. I knew that Jon would relapse and return to ICU from Step Down, which he did 4 times. We moved quite a few times in those 45 days.

    And, as it happened, Jon doesn't have Medicare. He has Medicaid. And strangely, Medicaid won't pay for the acute care hospital. They'd rather pay MORE money to the major hospital for Step Down care. Fine with me.

    To help B's mom, I looked up the acute care hospital on the 'net. I was impressed with the level of care they give. Patients on ventilators, patients recovering from surgery or a car accident, patients with serious ongoing needs.

    A typical stay for a patient is 25-30 days. The goal is to stabilize the patient to send home, with home health nursing care.

    It looks like B and Mom have no option. Fortunately the acute care hospital is associated with our hospital, and our docs do visit patients in the acute care hospital. So there is some continuity of care.

    I had to talk B's mom down, as she said, "I'm taking him home."

    I said, calmly, "No, you're not, honey. You can't. You can't take care of him at home. You'll be right back in the ER."

    Once I had scoured the acute care hospital's website, I called B's mom, told her to look at it tonight, when her son visits and brings her dinner. I reassured her that it looks like a full care place, and I emphasized that is it NOT a nursing home. It is a real hospital. With doctors and nurses qualified to handle seriously ill patients. Not a warehouse. That made her feel better.

    She may not be allowed to stay there all day and night, and that's an issue she will need to address when she visits the acute care hospital tomorrow morning. As hard as I know it would be for us not to be with Jon day and night, I can see a benefit for B's mom, in that she could go home at night to sleep, and be better able to care for B, when he does come home.

    The Feeding Issues/NG/Gtube/GI Doc

    He has an NG tube, and she's had no training in using it. He took 3 bites of pudding today, then choked and gagged (which is common with the NG tube) and the SP stopped the feeding. So, I talked to her again about the GTube.

    She is beginning to question B's quality of life, and she fears the Gtube will signal the end for him. He will miss eating, and that is so unfair to him, she said.

    She asked me if Jon missed eating. I said of course, but he doesn't miss choking, gagging, and aspirating. And he understands that is why he has the Gtube. He understood that about Michael, as Michael did.

    I explained to her that both of my boys gained weight and were healthier in general, because of the Gtube. And, I tried to help her understand that if B doesn't get fed enough calories and nutrients, he will not survive. For my boys, it was a Gtube or die.

    A pervasive septic infection in Michael's bloodstream took his life, not starvation. In fact, I insisted that his feeding continue, even though I was advised by nurses that this was not hospice protocol. After Michael passed, the hospice nurse asked us if we wanted his Gtube removed, and I said, "No. It is a part of him. It gave him 3 1/2 more years with us. It was a blessing."

    B's mom is stubborn and insisted that she would feed B orally every 5 minutes. High caloric Ensure pudding. Well, I'm praying that she can, but I'm trying to be realistic and prepare her, if he can't manage that.

    The Unbelievable GI Doc

    The on-call GI doc is familiar to me. I found him to be useless. When I described Jon's constipation issues, and his distended belly and fluid retention issues, he said, "Give him Miralax." That was it. He was nice, but useless.

    B's Mom said that the GI doc told her:

    1. A Gtube is a major surgery

    2. There is a risk of infection with Gtubes.

    3. An NG tube can be in place for months, without any problems.

    So, I corrected the GI doc's statements:

    1. A Gtube is placed endoscopically, under a light sedative, like Versed, in the GI lab. It takes longer to set up than it does to place the tube. Tube placement takes about 10 to 15 minutes maximum. It's not major surgery. No recovery room. It can even be an outpatient procedure.

    2. Michael had an infection around his stoma after his Gtube placement, but I think that was relative to his weakened condition. It cleared up quickly, and he never had an infection thereafter. His tube was replaced after 3 years of use, and the GI remarked how terrific that was, because we had cared for it properly, and tubes were made better in those days than they are now. But even Jon's lasted 18 months.

    There is no more risk of infection in a Gtube than there is in anything else.

    3. An NG tube probably can be in place for months, but it is uncomfortable, impairs swallowing, causes oral aversions and sinus problems, including headaches. Michael certainly suffered these things, as did Jon, but to a lesser degree. If tube feeding is still an option after 2 weeks with an NG tube, it's time to consider a Gtube.

    I'm really hoping that we can get Jon's GI doc for B. He is kind, compassionate, and explains everything in detail but in simplified terms. He is a fantastic person, as well as a very skilled physician.

    Meanwhile, B's seizures increased today, and the doctor ordered Ativan, so B is out of it again. I completely understand his mother's concern about his quality of life. Her boy has seized for 36 years, and we begin to wonder how much a body can endure. She is at a very frightening threshold with her beloved son right now.

    Thank you all for your thoughts and prayers. And for supporting our dear friends, who are like family to us. We've been through a lot together. And though B's mom isn't a member here, believe me, she is one of us.

    Imagine ... she is 70 years old, my friends. That is incredible. A single mother for 30 years. She's amazing.

    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.

  10. #20
    Distinguished Community Member andromeda31's Avatar
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    Wow, sorry to hear the seizures are not getting better. :( That does not sound good that they are not under control. Are the rooms at the acute care hospital singles or doubles? Just curious why she would not get to stay with him, though I agree it would probably be good for her to be able to have a break and get proper rest. I can remember when C was in the NICU as a baby...I would stay all day and go home at night like I was punching out of my job and going home....I got used to trusting them to take good care of her when I was away...so much that it was a bit scary to think when she came home finally that I would have to do it 24/7! I never really liked dealing with the NG tube when C had that (as an infant)...she only had it in the nicu though, was able to come home without. She could actually push it out with her stomach muscles though! As much as I fear Gtube, I think I would choose that over NG again. Praying that they can stop his seizures and that the hospital transfer works out well....

    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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