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Thread: Jon Is Seizing

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Unhappy Jon Is Seizing

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

    Unfortunately, Jon began having seizures today. Not convulsive. Staring, lip pursing, and left hand clawed (not fisted) and slightly tremoring. Lasting for 5-8 mins. So far, weíve seen three of these episodes: 1, 2, and 3 p.m. At 2 p.m., we gave Jon 1 mg of Ativan under his tongue.

    Itís possible that he had other seizures prior to these, when we were out of the room. His eyes were blood shot this morning, which is unusual for him, as he hasnít had blood shot eyes, since he first started with the pneumonia/UTI. The seizures are subtle, and he makes no noise. After the seizure, he appears to be normal. So, when we were making our breakfast and eating, he could have had a seizure, for example.

    I gave him 15 mg of Phenobarbitol (one of his seizure meds ~ and that is 1/2 his dose) hoping that would also help to calm these seizures.

    He slept for an hour (4 to 5 p.m.), which isnít enough. He only had 4 hours of sleep last night, which sets him up for seizures. But, I firmly believe that the culprit is BACTRIM, the antibiotic heís taking for his UTI.

    I checked his 2011 chart today and finally discovered the entry Iíd been looking for ~ He seized on New Yearís Eve and New Yearís Day. He was on his 5th day of Bactrim. Heís on his 5th day of Bactrim today. Previous to the 2011 seizure, heíd taken it without incident, but this was a red flag.

    So, we stopped the Bactrim. And I havenít given him his Zithromax yet today. He has 3 more days of those, but until these seizures are controlled, Iím holding off. It could be the Zithro, even though he didnít have a seizure on Zithro, when he took it in 2010. It could be the combo of Zithro and Bactrim.

    My internet research shows that Bactrim increases levels of Dilantin in the bloodstream, which means Jon could be toxic on his Dilantin. He is also not pooping well (gave him M.O.M. today), which holds the Dilantin in his system. He is never ever going to take this drug again. Ever.

    We closed his bedroom shutters and turned on his stereo, hoping to lull him to sleep. But, he asked for football, so thatís what heís watching now, alert but foggy.

    Weíve had a dickens of a time keeping his O2 cannula in his nose. He is fighting it, and trying to pull it out, when his wrists are restrained. He practically folds himself in half to get his hand to his nose. We have to tie his arms down, and we hate doing it, but he canít be off of O2 yet. His SATS drop to 86, when heís off of O2. On O2, they are 97. We are trying to wean him off of the O2. We dropped it from 2 liters to 1.5 liters today, and heís doing well. So, weíll just keep knocking it down, until he has steady SATS of 95 on room air.

    His mucous is white now and thinner. And his urine is an excellent color, and his output is terrific. He is definitely better. But now heís battling seizures.

    Please pray with us that these seizures will stop without further intervention. Itís very scary when he seizes, because the potential for escalation is always there. Thank you so much.

    Praying that all is well with all of you and your loved ones ~

    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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    Rose, I'm so sorry to hear this. My hert sank when I saw this thread pop up! Praying hard that his seizures are getting under control and he continues to recover without complication. Thank you for the update.
    Mary Grace

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    Distinguished Community Member Jo6's Avatar
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    Rose, I am so sorry about the seizure's. You know I am new to much of the things you post about, but how would I know if you didn't post the info, in full detail. It has to be wearing on you as well as hubby. Of course Jon also.

    I am so grateful for all the information you post, but I am so sorry you are having to live this. I shall never forget how you have helped me on this road.

    I will check back in later and I'll continue to pray for Jon and also for you & hubby.

    Rose you must take care of yourself. That is the only way you can take care of Jon. I know you know that.

    all my love, Julia
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

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    Sending prayers up for Jon!

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    I'm so sorry he is having seizures! I will pray!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Sill praying all is well and Jon's seizures have subsided, and recovery has continued.
    Mary Grace

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((HUGS TO ALL)))))) ~

    Thank you all so much for your prayers!

    Jon is still having these same seizures, typically in the afternoon, possibly when he's troughing or near trough level. They come in clusters, and last for a minute or two each time. He had several this afternoon, prompting us to give him Ativan under his tongue again. That didn't stop them, but maybe it did stop them from progressing. I've given his seizure meds a little early this evening, hoping to get on top of them.

    To refresh my memory about seizure types, I visited Epilepsy.com. I would classify these seizures as simple partial, maybe with a little complex partial and Gelastic tossed in with them. A simple partial would explain his pulling at his trache and G Tube, which he never does but has been doing over the past two days.

    I called his nurse this evening, and although she is packed and training a new RN (new to the agency), she agreed to visit at 8 in the morning tomorrow to draw blood levels. I'm sure that he needs dosage adjustments, but we have to know the levels to determine how much/little to alter. Is he toxic or below levels? We should have results by noon, so that we can adjust his evening dose.

    She did have his levels from the draw on 8/14 (can't believe it has taken so long!) which indicated that he was above his normal/therapeutic levels on both Depakote and Dilantin. Normal for others, too much for Jon. But that was then, before Bactrim.

    The good news is that he's peeing well, with clean, clear urine, and his SATS are acceptable on room air today. Jim gave Jon two deep suctions today, which really helped. He finished Zithro, and we stopped Bactrim on his 5th day, when he started to have seizures.

    A week ago today we were at ER. And this all started on 8/8.

    Jim cancelled his dental appointment this morning, because I only had 3 hours of sleep, after being on my feet 20 hours yesterday, and battling Jon over his Gtube, Trache, and O2, as he was grabbing everything, plus I was watching him for seizures, which evidently was happening with that activity. Jim took one look at me when I got up, and he said, "I'm staying home." The receptionist didn't seem to be too understanding, but I'm sure that our dentist understands. We are not in charge of our time or our lives. Jon is.

    That plumbing work and bathroom remodel? Ancient history right now.

    We are on the cusp of another heat wave, so that adds to our concerns. Keeping the house cool, but not making it cold and stuffy with the a/c. May have to cave in a few days with a/c on in the afternoon. I am a walking sweat factory. Thankfully, there are no fires in our vicinity.

    The moon appears to be approaching its full state. I wonder whether that has any bearing on Jon's current ordeal. It always affected Michael adversely ~ increase in seizures.

    It took me a couple of hours to cobble together this update. I waited for his seizures to settle down, but I must check him every 5 mins.

    So that's our story, and we're praying that the blood levels will give us the answer for Jon. He doesn't have a neuro, except when he's in the hospital, and they are obliged to provide one. I have asked them all, and none of them will accept Jon as a patient, because I refuse to try new meds on him. Oh, and he's a Medicaid patient.

    Thank you all again for your prayers, love and support. Sending it all back to you ~

    Love & Light,

    Rose

    PS: Jon is back on O2 ~ his SATS weren't staying up and his heart rate was elevated. I think he is working too hard to breathe, and that could be a factor in his seizures, which are still cropping up in one way or another. A jerking shoulder, a pursed lip, "picking" at things. His hands are tied down, and he's not happy. But I'm sure he'll feel better for the extra help with breathing tonight.
    Last edited by Earth Mother 2 Angels; 08-25-2015 at 07:52 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.

  10. #8
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    Thumbs up Seizures Abating

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

    Jon woke up in time for his nurse's visit to draw blood for Dilantin and Depakote levels. He was very chipper and smiling. The "new" nurse, who accompanied Jon's nurse, is a young, pretty gal. Jon couldn't take his eyes off of her. She was very sweet and attentive. One poke and plenty of blood for the tests. Jon didn't flinch.

    He was a different man today. Some of the fluid has gone down in his torso. He has been alert, chatty, and he hasn't had any apparent seizure activity, thankfully. Scratch that ... 7 p.m. his right arm twitched a little. He was distant, not staring, but less focused. I managed to coax him into looking at me, and then smiling. I gave him his Depakote and Pheno early. He has to wait an hour after his formula is turned off to have his Dilantin, which is due at 7:45.

    He has been off of O2 all day/evening. SATS are 91-94 on room air. Heart rate still peaks to 100+ occasionally. Temp is normal. Urine output is good, color is light amber, but his nurse didn't seem too concerned about that.

    The results of his blood test surprised us: Dilantin 7 and Depakote 22. Jon's therapeutic range is Dilantin 12-13 and Depakote 32-37. We thought that his levels would be high to toxic. Instead, they are significantly lower than his therapeutic range.

    Now we have to factor in that these levels were taken before his first morning dose, only an hour before the dose. His levels are usually taken 3 hours before his evening (second) dose. So a discrepancy in levels is likely to occur there. We have to consider his clinical status today of not seizing and being more alert. We have to decide whether we need to increase his doses, and which ones, and how much.

    It's like throwing darts in the dark, while wearing a blindfold.

    In an ideal world, we could have blood draws every day at both times of the day, or for that matter before his last bedtime dose too. And we would be able to know whether his blood levels would return to therapeutic level, once all of the antibiotics are out of his system.

    My decision this evening is to tweak both meds upward a tad bit. Nothing drastic. We don't roll that way. A doc would say, "Give him a loading dose of 500 mg of Dilantin!" And the answer to that is ~ NO! That has never gone well for Jon; it usually puts him into a stupor for days.

    Please wish us luck!

    And ... I forgot the most dramatic moment of the day ...

    Just as we were setting up for Jon's blood draw, the power went out!!! Jon's bed deflated immediately. Jim managed to pull the generator over to the side of the house and start it up and hook up Jon's power in a matter of a few minutes. The power returned by the time the nurses were leaving. I walked up the road to find the utility workers to ask whether we were going to lose our power again. I found workers picking up the No Parking signs on the street, and they said it was over, as far as they knew.

    We waited until our neighborhood was taken off of the Outage Alert Map on line for Jim to go out to pick up Jon's meds and a few bits of groceries. We never know when this kind of thing is going to happen. We didn't receive a notice advising us that a power outage was planned. Our tax dollars at work.

    We are running the a/c, because it's just hot. And tomorrow and the next day will be hotter. A cooling trend to the upper 80s is predicted for next week. That's good since that is when the slurry sealing of our streets will begin. Why they always pick the hottest time of the year to do this is beyond me. And when the street is slurry sealed, we are trapped for 2 days. We have to park our van off our street. And if Jon needs paramedics, well ... too bad! Let the homeowner's association sue us! I would have no compunctions about going to the media if they did. I can mention the 4 bogus violation notices we received in July, which were intended for "another residence," and "inadvertently sent" to us.

    Thank you for your prayers and healing, positive energy for Jonathan and us. We are taking it as it comes, and we are so grateful to be together, at home, with Jon improving.

    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.

  11. #9
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Oh my! So glad you have a generator, but poor Jim having to haul it around the house in the hot weather!

    Hopefully a little extra Depakote will help Jon stabilize. Wow, 22 is low! Caitlin's normal range for her Depakote is around 90-100. She's been on that since 2008, we just can't get rid of it even though I wish we could. Wouldn't it be nice if there was an easy test for levels, like a finger poke for checking glucose? I wish! :)

    Thinking of you (((hugs)))

    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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    Being that Tyler seizes 24/7, you gotta know I HATE seizures. Sorry to hear they are hitting Jon. The full moon does affect seizure activity. See it mentioned all the time on various neurological websites (and Tyler). Temp is also a variable. Tyler was up at midnight last night seizing, gagging, retching, shrieking and in a cold sweat. Almost full moon; check; hot and humid, check, possible UTI; checking. Sure hope Jon gets better soon and back to his usual norm. Hope you get some sleep Rose. My husband is going in for a sleep study tomorrow. Only getting about 3 hours of sleep nightly. I at least get 4-4 1/2. Our electricity is scheduled to go out this morning at 9:30. Sounds like we are mirroring you guys. Continued prayers for all of you. Just got home from Big Bear and watching the forest fire above the Village a few days ago. Sure was happy to see the wind going eastward and away from our cabin (and my sisters house). Air quality bad, so we headed home. Now trying to catch up on my sites and emails.
    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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