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Thread: Keppra/Vimpat: Increased Seizures Part II

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Keppra/Vimpat: Increased Seizures Part II

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

    The saga continues for B. His mom called me this morning from the ER.

    Last night, B did not sleep. He moaned and was restless and agitated (possibly seizure activity). He was swimming in sweat to the point that she changed his shirt and sheets every 20 minutes. His breathing was erratic. She said his pupils were dilated, and he had a look of "desperation" in his eyes.

    When listening to B's lungs, the ER doc didn't hear any sounds of pneumonia, but a chest x-ray was taken to rule it out. His heart rate was 115, but it elevated to 140, when B began to seize during our conversation. His BP was 109/60, which is reasonable (low but not for him -- or Jon).

    B was dehydrated with low urine output. The ER nurse did an in and out cath to get a UA sample and relieve his bladder, but the ER doc didn't want to put in an indwelling cath. He's probably waiting to determine whether B will be admitted. Now that B is getting IV fluids, he will likely urinate better.

    When B's mom told the ER nurse about B's stay in the acute care hospital, the nurse shook her head, and said, "I don't know why we send people there. I hear awful things about it all the time, when patients are returned to us, sicker than when they left."

    Right there ~ obviously the inferior care at this ACH is commonly known by our hospital's medical staff! Why don't they do something about it?! Why do they keep sending patients there?

    I smell money and collusion.

    Overdosed?

    In one week, B, who weighs 70 pounds soaking wet with a rock in his pocket, went from 250 mg twice a day of Keppra to 1,000 mg Keppra three times a day. That's 500 mg a day versus 3,000 mg a day.

    I think there is a good chance that B is overmedicated.

    B's mom said to me, "Our hospital neuro wanted to treat it aggressively, so he increased it to 750 mg 3 times a day."

    I said, "Okay. Experiment failed. I think he needs to back down on the Keppra."

    Vimpat was added to the Keppra, a drug which B has never taken. Perhaps the two drugs are interacting poorly, or they are causing adverse side effects including seizures. All of which are listed in the drug information about them, including suicidal thoughts and hallucinations.

    B's mom doesn't recognize many of the things B is doing as seizures. She is used to his specific types of seizures, and now, in my opinion, he is generalizing and experiencing the Kindling Effect (one seizure begets another). I reminded her that seizures manifest in a variety of ways, and what she's describing sounds to me like seizure activity.

    I hope that B is admitted. I told her to ask for the on call neuro, because B's underlying condition and reason for being there is seizures.

    Blood was drawn, so they await results. I think he needs another EEG to compare to the last one for changes, since the increase in Keppra and addition of Vimpat. I also think that B needs an MRI to rule out any bleeds, lesions, or other things, which may not show up on a CAT scan.

    The G Tube Redux

    B's mom wanted to discuss the G Tube again, thinking that B might have one placed today or tomorrow. I assured her that G Tubes aren't placed on an emergent basis as a general rule. Most likely, B will have to wait until Monday to see the GI and have B scheduled for the procedure. This is good, in a way, since she'll have a better chance of getting our wonderful GI to do it.

    She was fretting over having all the supplies in place, and I assured her that the hospital social worker and discharge planner will do all of that, and a home health nurse will be there when B comes home to get them all set up.

    B's mom is about at the end of her rope, and she is holding on tight with both hands. She told me that she can't retain what I tell her and asked me to write it all down, send it in an email, and her son would print it out for her to have with her. I gladly did that.

    I think she's asked me a dozen times over the last 12 days or so, if B will have general anesthesia! Poor dear! I told her that Jon's Gtube was placed by the GI doc and his team, bedside, in Jon's ICU room in 2009. It's the LEAST of her worries right now. Our GI's are pros at the Gtube placement. It's the seizures and the meds that need to be worked out.

    Please chime in if you have thoughts, opinions, experience with these drugs, or any ideas for me to help B and his mom. And thank you for your prayers and support. I'm very worried and a bit frightened about what's happening to B, although I do not let on to B's mom that I feel this way. He just suddenly took a downhill turn, out of nowhere, and it's been weeks now that he's been seizing uncontrollably. He had his birthday, one lovely day, when he felt better. And then the bottom dropped out again.

    Thanks again ~

    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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    Ugh... this sounds bad. Your advice on the meds and on the Gtube sound right on and I have nothing to add. Just to advocate hard and strategically (as possible) for the best hospital placement. The acute care facility is clearly a dismal failure. Prayers and REALLY STRONG good luck vibes coming out of me to your friend and her dear son. 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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    Distinguished Community Member andromeda31's Avatar
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    ((((hugs))))....will they hook B up for some long term EEG monitoring while he is there? That is one thing that always bothers me....when meds are changed up and then no EEG to check what is going on (pet peeve of mine with C's providers). B had quite a lot of drug changes in a very short time so if it were me, I would want the EEG done to verify exactly what is going on with the seizures. Sad that the acute place has a known bad reputation and nothing is done to change it. Prayers for B to improve and for strength for B's mom to deal with all this!!

    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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    Oh, and I wanted to echo your experience of the Gtube placement, Rose. It's the LEAST of what your friend needs to worry about, it's such a simple procedure - the stomach is very close to the skin surface so the closest similar procedure that I can think of having your ears pierced. It's over in a second, it hurts a bit when it heals but it's not bad because it's not invasive (people always think of it as being majorly invasive, but it's not!). Also, the stoma will start to heal over in three hours of she decides that she doesn't need it anymore (although I am sure she will it's a Godsend). Thinking of you all, Donna xo
    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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    I am sorry to hear that B is still ill. Very worrisome for his poor, exhausted mom. Tyler wouldn't have tolerated that sudden, huge increase in his meds. His seizures would have gotten much worse. Higher doses of any of his drugs caused increases in his seizures. We always have to up the dose very slowly or pay the price. Hope your friend can get some rest during all of this.
    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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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Thank You))))))

    Wait 'til you hear this!

    The ER sent B home yesterday evening. The ER doc said that B's problem is dehydration, and he needs IV fluids. He declared that that can be done at home with home health nursing.

    Evidently, the ER arranged for our nursing service to send the IV supplies (Pole, bags, saline, syringes, etc.) to B's house, and a nurse arrived shortly after the supplies were delivered. Okay, that's fine.

    Except, you will never guess what they did at the ER before B left with his mom.

    THEY TOOK OUT HIS IV!!!!!!

    Because B is so dehydrated, as well as malnourished, and as thin as a rail, three different ER nurses tried, before one of them was able to get the IV line in.

    Now, the hospital arranged for IV at home, and the nurse, but they removed his IV before he left the ER. B's mom was too exhausted to realize what they were doing to tell them "no!" but she shouldn't have needed to do that.

    B's mom called me from home last night. I could hear the home health nurse talking on her phone in the background. She couldn't get an IV into B, and she was calling the agency, and the nurse, who was assigned to come out the next day (today, Sunday) to set up B's case with the agency (paperwork) and check the IV line. She was desperately trying to find another nurse to come to B's home to try to put in the IV.

    Apparently, they had no luck, as B's mom called this afternoon and left a message (I haven't called her back yet; letting the dust settle for a few hours).

    Back to the ER this morning to get the IV put in, and the ER doc said: Admit him.

    By now, B is severely dehydrated. Like dangerously.

    I would guess that he's in Step Down. B's mom said that the hospitalist was setting up a G Tube procedure for B, hopefully with our GI, to happen tomorrow or Tuesday. The sooner the better, because B needs nutrition to process all of those drugs and produce the waste to get rid of them.

    I'm sure he will get a neuro consult, and B's mom is going to discuss lowering his doses. She is confident that he is overmedicated, as are all of us (you and me here on CN2 ).

    When Jon had his mega seizure last year in June, I strongly feel that it correlated to his over hydration and under nutrition, as we were struggling with his bloating and vomiting issues. And, while B's mom takes superior care of B, I feel it's likely that he wasn't getting enough nutrition and hydration orally, before the seizures went out of control. Through the years, I've learned how vitally important those two things are to overall health, as well as seizure activity.

    And if one isn't peeing and pooping properly, then those meds are just sitting inside the system building up.

    While I understand the neuro's desire to treat B's seizures aggressively, I don't think that he factored in B's weight or that B hadn't had proper nutrition for quite awhile. And even when the NG feeding began, I'm sure that B was being given a small amount hourly, like maybe 40 cc/hr.

    Medicine needs to be more holistic. All of these specialities parse out their one area and focus solely on that, without recognizing that every part of our bodies works in unison to keep us living.

    And there is this ... If our hospital had kept B in for a few more days and not transferred him to that hell-hole ACH, then he wouldn't be back there in this condition. B's mom was ready to go for the G tube. B needed more time with supervised care and to have the Gtube placed. I think that they screwed up sending him to the ACH, and they definitely screwed up, when they sent him home last night without the IV!

    Donna ~ B's mom will never ever take B to the ACH. That is cast in stone. I think once he gets stabilized, and he has home nursing in place, he will do well. He certainly doesn't need to be at the ACH. There is no question that B (and Jon) would receive better care at home, with nursing support than at the ACH.

    Thank you for agreeing with me about the Gtube, and I think she understands that now. Her sister-in-law (retired nurse) and niece (CNA) have also reassured her that it is a simple procedure, with no long term issues. But it is rather urgent that he get it within the next few days to get nutrition. It will become an emergent, crisis need soon.

    Lisa ~ I don't know whether B will get another EEG. Apparently, Medicare is cutting back on "repeat" testing, thinking that it is done frivolously or capriciously to make money. Well, that's probably true. But in some cases, like B's, a repeat EEG is important to COMPARE results from before the med increase and after the med increase. It's logical.

    Yes, it is appalling that our hospital, with its two new multimillion dollar towers, state of the art equipment and techniques, and huge, luxury ICU rooms (now mostly for vent patients) would send any patient to that ACH. They know what goes on (or doesn't go on there).

    The next time we're in our hospital, and I know there will be a next time, everyone will get an earful from me about B's experience at that ACH. And God help them all if they suggest that Jon be sent there.

    They all know me, as we've been there so many times, so the fact that one of our docs suggested this ACH to me in 2009 absolutely infuriates me. He, and everyone who works at our hospital, knows that I would never put up with that place for 5 minutes. I would see that there were no bed rails on the bed, and I'd walk out and my son would come home.

    I can, and I do, everything that that ACH is supposed to do.

    Tamie ~ Thank you for sharing your experience with Tyler's med increases. I know that's how my boys have reacted to sudden med increases, and I also know what a fine line we walk between too low and toxic.

    B's neuro treated Jon in 2009's 45 day hospital extravaganza. He started immediately suggesting that we wean Jon off of Dilantin (which Jon's been on since he was 13) and Depakote (since he was 26) and Pheno (since he was 2 years old) and wean him onto ... oh ... pick a drug, any drug.

    I looked at him incredulously, and I chortled, "Doctor, he's not seizing. He's been controlled for many years on these drugs. We're not changing horses in this race now. Too late." I paused. "And he's in here for pneumonia. Not seizures."

    This neuro actually admitted to B's mom that neuros are essentially drug pushers. All they can do is offer this drug or that drug and hope it works.

    Let's play darts in a pitch black room.

    Well, maybe it would help if they kept track of which drugs work best on which seizure types. I don't know. Sounds like a plan to me.

    Thank you all for your support and prayers. I'll keep you posted. Perhaps we are all learning from B's experiences. I think we are, as I know that he is a teacher, like my boys and your children.

    Keeping the positive energy flowing in the midst of the negativity ~ that's a challenge we all must face ~

    I love you!

    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 03-24-2013 at 06:00 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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    OMG Rose that is just so sad... I can't believe they took out the IV! You're so right it was not up to B's mom to have to tell them that, if they cared at all they would have realised that. I do hope that B's mom is taking care of herself... it's so stressfull and exhausting to go through all she and B are. I just hope and pray that they get B stabalized and on the mends quickly. She's very lucky to ahve your support through all this. I know personally that it's a learn as you go kind of situation. I had no experience with hospitals when Kathleen was first admitted 11 years ago. I've learned a lot along the way but there's always more. Thank you for all the updates. I think about them often and pray things are getting better.
    Mary Grace

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    Ohhhhhhh no. Your poor friend and her son. They cannot get a break. I'm sorry - continued prayers.
    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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    Question Waiting for GTube

    ((((((Mary & Donna))))))

    Thank you, and thanks to all who may be reading B's saga, and praying for him and his mom.

    Here's today's installment ~

    B's mom told me this morning that a radiologist was going to place B's G tube. This made no sense to me. While we were talking, the orderly arrived to take B to the lab for the procedure. Or so we thought ...

    B's mom called this afternoon, rather frantic. Two nurses were trying to put an NG tube into B's nostril, without success. The purpose of the NG tube was to put Barium into B, so that the doctor can see B's interior more clearly. This is the purpose of the radiologist. The G Tube WILL BE placed by a GI doc. B's mom misunderstood. Poor dear is so tired.

    I spoke to B's nurse, a very nice man, who explained to me that because B is so dehydrated and malnourished, the doctors want to make sure that he doesn't have any issues with his esophagus or gut. He is very frail. The nurse also said that they weren't going to continue traumatizing B trying to get the NG tube in, and that he was calling the doctors to let them know that they couldn't do it.

    This helped me to explain it all to B's mom, because my boys didn't go through this with their G Tube placement. This was quite out of the ordinary, based upon my experience, and those of others on the G Tube forums.

    B's nurse said, "We have to get that G Tube in him. He really needs nutrition."

    An ICU nurse was called, and she tried 4 times unsuccessfully to get the NG tube into B. So, now they wait for the doctor tomorrow morning to decide what option is left.

    CAT SCAN & X-RAYS

    B's mom expressed concern that the docs want to do two CAT scans on B, before and after the procedure. Too much radiation. She fears that B will get cancer.

    I said, "We can't worry about cancer in the future. We have to worry about saving B's life right now. However many tests they need to do, let them do them. He isn't going to get cancer from these few tests."

    I reminded her that Jon had a chest x-ray every day of his hospitalizations. 45 days. 40 days. 8 days. 10 days. Jon is at risk for cancer from radiation. He should be glowing in the dark. I'm sure that has caused his hypothyroid.

    But B hasn't been hospitalized or x-rayed for over 20 years! He is not at risk.

    When Michael had chickenpox pneumonia in 1985, he needed a blood transfusion. I was terrified. I said to his nurse, "What if he gets AIDS?"

    She said bluntly, "Do you want to worry about him dying now or later? If he doesn't get this blood now, he will die. If he gets AIDS, which is unlikely, he will die years from now."

    That's exactly what it boils down to, sometimes.

    THE QUALITY OF LIFE DOCTOR

    B is not in Step Down, he is in a medical unit, where we've never been. I do not know the nurses or doctors who serve this unit.

    B's mom told me that a doctor sauntered into B's room yesterday, his specialty or purpose unknown, and he asked B's mom, "Why do you want to put a G Tube in B? Why do you want to put your son through that pain? Look at him. He has no life. Why don't you just let him go? We have people here, who can help you make this decision."

    B's nurse and aide stood on either side of B's mom, holding onto her. She said, "You don't know my son. You don't know anything about him or his life, or his family, or how loved he is, or how happy he is when he is well. How can you come in here and tell me that I should let him die of starvation, when all he needs is a simple G Tube to make him healthy again?"

    B's nurse said to the doctor, "He's getting a G Tube. That is her decision."

    He left without a word.

    This doctor needs his license revoked for cruelty and heartlessness.

    Without a doubt, a G Tube is a life-saving procedure, but it isn't "life support." It is merely a means to an end: getting nutrition into the body.

    Millions of people have G Tubes. It's been around for many decades as a substitute for oral feeding.

    Beyond this, if this "doctor" would have thoroughly reviewed B's chart, he would have discovered that B has been healthy until this onslaught of seizures and status. B does have quality of life.

    SEIZURE MEDS

    On her own, B's mom lowered B's Keppra to 500 twice a day and his Vimpat to 50 mg twice a day. She feels that his seizures are lessening.

    However ...

    She described the following:

    clenched fist against chest rubbing as if itching
    left foot rubbing against sheet

    She said she held his foot and his hands all night last night.

    I told her to ask for soft restraints and something to protect his foot from developing a wound.

    Is this seizure activity? Is this a med reaction? Is this an allergic reaction? Is this starvation? Is this pain?

    Your thoughts?

    Let's pray that B's G Tube can be placed without all of this falderal. It should be such a simple procedure.

    Thanks again for your support and prayers, good thoughts and positive energy. And for sharing your experiences.

    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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    Distinguished Community Member andromeda31's Avatar
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    Hi,

    Wow, what a doctor....sorry your friend had to have an encounter with someone like that! As for the fist and foot rubbing....one thing Caitlin's old neuro would ask us when I reported things I saw her doing...they wanted me to check if it was seizure by putting my hand over whatever body part to see if the motions stopped or if I could still feel rhythmic motion (seizure)...does that make sense? I feel like I am not explaining it good! We had issues with arm tremors from too high of depakote...I knew they were from the med but they actually tested it in hospital by sticking (with stickers, not under skin) wires that measured the motions of her arm muscles...I thought it was overkill but it did prove me right. Hope the G-tube gets put in soon so B can get back to his home!

    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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