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Thread: Jon's Out of the Blue Seizures

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Question Jon's Out of the Blue Seizures

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

    Jon's Seizures:

    Monday, 2 a.m. 8 minutes

    Tuesday, 11:00 p.m. 5 minutes

    Common Factors in Both Seizures

    He was trying to go to sleep, when the seizures occurred.

    He had watched a Pink Floyd concert DVD, before we shut down for the night, for him to go to sleep.

    Seizure Description

    Pursed lips. Clenched fists.
    No convulsing. No head or eye movement.

    Post Ictal

    Put his index finger up to his mouth to attempt to pry it open, then he relaxed.
    Smiled, reached up for a hug. Spoke.
    Fell asleep within 15 minutes.

    Our Response

    Increased doses on all three seizure meds.
    Close monitoring.
    Asking for a visit from his nurse to draw blood levels.

    Vitals

    During the seizure on Tuesday night, his vitals were good: SATS 96 Heart Rate: 79
    His urine output is good, and he's having regular BM's. I did have to give MOM a few times. Could Magnesium cause these seizures?

    Why?

    Hormonal changes: He's 43, and men start experiencing hormonal changes at that age. His prostate is terminally enlarged. He has hypothyroidism, which is untreated.

    Sleep disorder: He does go through a lot of machinations, before he finally falls asleep. He rubs his head and his chest with his hands, he moans and groans, he chews on his fist, then he does that all over again, until he finally goes to sleep. We come in frequently to check him, he reaches up for hugs and cuddling, then he quiets, then he starts the whole thing over. We call it "winding down." When he goes quiet, we check him to make sure that he's sleeping. That's when we discovered him seizing Monday morning and Tuesday night.

    Pink Floyd?: Jim mentioned that Jon had watched PF both nights before bedtime. But Jon has watched PF many times, without having seizures afterward. And wouldn't we expect him to seize while he's actually watching the light show?

    Meds too low with troughing: Could be. Both were during trough times.

    Other factors: Sunday he did have a rough night, with his belly blowing up with gas, resulting in excess secretions, gagging, choking, and lots of suctioning through the trache, with eventual vomiting. That's why he was so late in getting to sleep. He only slept 5 hours. Today, he slept nearly 12 hours.

    Now, if you can figure out this mystery with Jon's out of the blue seizures, I will buy you a luxury home in the Bahamas. When I win the lottery. (*Fair Warning: I don't play the lottery.)

    Seems to be the season for seizures.

    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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    The mysteries never end do they? So much to think about. I don't have any experience with seizures, Kathleen has never had a seizure. Does sleep deprivation trigger a seizure? It could also be a combination of different things you mentioned like "the perfect storm". I can sympathise with you trying to figure out what the trigger was. We seem to be in a constant state of mysteries. I'm sure otheres here who have experience with seizures will offer some ideas. Keep us posted.
    Mary Grace

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    I'm no help. Tyler seizes all day, every day. I would be in a state of shock if he didn't seize. Sure hope you get to the bottom of Jon's seizures cause having them pop up out of the blue would surely concern you.
    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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    the new cfl lightbulbs dont help people
    "Here's an unpopular opinion: I'm actually not at all concerned about innocent men losing their jobs over false sexual assault/harassment allegations. Sorry. If some innocent men's reputations have to take a hit in the process of undoing the patriarchy, that is a price I am absolutely willing to pay." Teen Vogue writer Emily Lindin

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    just being around wireless signals could be bad

    smart meters on homes are bad as well as flat screen tvs even when they are off i think and microwaves are bad

    google EMF
    "Here's an unpopular opinion: I'm actually not at all concerned about innocent men losing their jobs over false sexual assault/harassment allegations. Sorry. If some innocent men's reputations have to take a hit in the process of undoing the patriarchy, that is a price I am absolutely willing to pay." Teen Vogue writer Emily Lindin

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    My first guess would be the sleep deprivation...and maybe that plus the video triggered it? Hopefully the levels come back soon and that can shed some light! I know Caitlin's levels can get weird sometimes for no reason. And I do always wonder why occasionally her poop has tons of depakote sprinkles in it and how does that impact levels. (I've asked about that and never got a real answer!) Hope Jon is having a better day today!

    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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    Community Member Firehorse's Avatar
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    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((HUGS TO ALL))))))

    Jon's Seizures:

    Monday, 2 a.m. 8 minutes

    Tuesday, 11:00 p.m. 5 minutes

    Common Factors in Both Seizures

    He was trying to go to sleep, when the seizures occurred.

    He had watched a Pink Floyd concert DVD, before we shut down for the night, for him to go to sleep.

    Seizure Description

    Pursed lips. Clenched fists.
    No convulsing. No head or eye movement.

    Post Ictal

    Put his index finger up to his mouth to attempt to pry it open, then he relaxed.
    Smiled, reached up for a hug. Spoke.
    Fell asleep within 15 minutes.

    Our Response

    Increased doses on all three seizure meds.
    Close monitoring.
    Asking for a visit from his nurse to draw blood levels.

    Vitals

    During the seizure on Tuesday night, his vitals were good: SATS 96 Heart Rate: 79
    His urine output is good, and he's having regular BM's. I did have to give MOM a few times. Could Magnesium cause these seizures?

    Why?

    Hormonal changes: He's 43, and men start experiencing hormonal changes at that age. His prostate is terminally enlarged. He has hypothyroidism, which is untreated.

    Sleep disorder: He does go through a lot of machinations, before he finally falls asleep. He rubs his head and his chest with his hands, he moans and groans, he chews on his fist, then he does that all over again, until he finally goes to sleep. We come in frequently to check him, he reaches up for hugs and cuddling, then he quiets, then he starts the whole thing over. We call it "winding down." When he goes quiet, we check him to make sure that he's sleeping. That's when we discovered him seizing Monday morning and Tuesday night.

    Pink Floyd?: Jim mentioned that Jon had watched PF both nights before bedtime. But Jon has watched PF many times, without having seizures afterward. And wouldn't we expect him to seize while he's actually watching the light show?

    Meds too low with troughing: Could be. Both were during trough times.

    Other factors: Sunday he did have a rough night, with his belly blowing up with gas, resulting in excess secretions, gagging, choking, and lots of suctioning through the trache, with eventual vomiting. That's why he was so late in getting to sleep. He only slept 5 hours. Today, he slept nearly 12 hours.

    Now, if you can figure out this mystery with Jon's out of the blue seizures, I will buy you a luxury home in the Bahamas. When I win the lottery. (*Fair Warning: I don't play the lottery.)

    Seems to be the season for seizures.

    Love & Light,

    Rose
    Hi Rose,

    Since you give no description or observations precursory to the start of the seizure, besides that he was watching a Pink Floyd DVD. The odds of just figuring this out from the miniscule amount to go on is slim, so I will just brainstorm, and give you the resulting cloud.
    I will assume he has watched this, or similar DVDs before with no problem.
    I will also assume you have administered MOM before with no problem.

    I doubt it had to do with the DVD, especially since it sounds like the seizure was after he watched it. Having been to several PF concerts myself, if one was photosensitive, they would definately seize during the laser show, not after, especially with the shade of red they use.

    Sleep deprivation takes a little while to become a problem. This usually means more than one night without adequate sleep. For me it's two nights without sleep before its a problem. Then I won't leave the house, and I will be having SP's most of the day. However everyone is different in how they react to things under various situations. But this is an extremely powerful trigger that can eventually make any person have a seizure.

    I'd look at the pathology of the problems that caused the gastric troubles, and if there was some type of infection. A systemic infection, viral or bacterial, no matter how slight, can throw that delicate balance that keeps the seizure threshold at its comfortable place.

    Keep in mind that what triggers seizures are not always neurological. The body is systemic in nature. What effect part, eventually effects the whole.

    Any type of stress can be a trigger. The more intense the stress, the more immediate the seizure will be. Unfortunately for caregivers, evaluating stress levels, and the intensity of stress of certain things can be difficult. Keep in mind as well, the stress may come in a form of an activity that is enjoyed, and "pumps them up, like an intense video game.

    All the best...
    Firehorse

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    Default Thank You All

    ((((((Thanks To All))))))

    Mary Grace ~ Yes, sleep deprivation and sleep issues can trigger seizures for Jon (and Michael). I guess many of us live in the State of Mysteries. We have a fairly good sized population, so I think ours should be the 51st State!

    Tamie ~ I know so well the all day every day seizures, as that was Michael's situation for 22 years. And that is so taxing and wearing. My heart goes out to Tyler and you. Since Jon's seizures are essentially "controlled," when he seizes, it is a concern. It's a breakthrough, and we want to know what is causing that breakthrough. And when Jon goes into a full blown tonic clonic seizure, we have to call paramedics, because it's always a near death experience for him. That's why we panic, when he has a breakthrough.

    clouds z ~ Jon is surrounded by electrical equipment. His hospital bed, his alternating mattress, his suction machine, his O2 concentrator, his nebulizer, his electric lift. But nothing wireless! He does have a flat screen TV, as well as a cable box and a DVD/VHS player, and a stereo. There is no escaping any of that.

    Lisa ~ Wow! Depakote sprinkles in poop! Someone ought to have an explanation for that! My goodness! That would make me wonder too. Let me know if you get an answer. I'm leaning toward his overly tired condition being a contributing factor. I do think they are related to sleep, as his seizures generally are related to sleep, or lack thereof. Jon's nurse is coming tomorrow to draw blood. Couldn't get her out here sooner. So, then we wait til Monday for results.

    Firehorse ~ Jon was in his "winding down" mode prior to both seizures, trying to relax to fall asleep. He has watched the PF DVD many times, he even asks us to turn off the lights in his room, which we don't do. Jon's brother was photosensitive, and he seized as soon as the flashing strobe and exploding lights started. And, of course, I've given Jon MOM many times, but he'd been constipated awhile, and he'd had it several days in a row.

    How I wish we could know the pathology of his gastric problems, but 6 out of 6 GI docs have no clue, not to mention intensivists and internal med docs. His home health nurse suggests that it correlates to the air he takes in with his Gtube and his trache, which fills him with gas, which then backs everything up. He fills with fluid in his gut/torso.

    Like everything else, he's done this before, and a seizure didn't result. That's where the mystery begins.

    No seizures last night, and it took him 2 hours to go to sleep, and he only slept 5 hours. He's groggy today, and we're thinking that now he's overmedicated, although we only made slight increases in his doses. I think his afternoon/evening dose is the critical one, as his seizures seem to occur at trough before his midnight dose.

    Thank you all so much for your thoughts, observations, and support. Guess I'd better start playing the lottery now.

    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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    Hi Rose, I thought infection too. Ohhh it's so frustrating that we have to wait for more episodes for some reality to reveal itself. Nick had a new type of seizure the day before we came home from the Bahamas - he was wide awake and lying on his back in bed. His head went to the left, he had nystagmus then his eyes rolled back, both arms rose up vertically with stiffness and the whole thing lasted about 15 seconds. We have an appt early Mon morning with the neuro because he's never had an awake seizure like this before, only nocturnal ones (not counting the weird gastro related ones he's been having which might be seizures). Anyway, I'll let you know what the neuro says and please let us know how Jon gets on! 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 Earth Mother 2 Angels's Avatar
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    ((((((Donna & Nick))))))

    I'm so sorry to hear that Nick had a new seizure. Bless his heart and yours. It's so incredibly frustrating. I pray that the neuro will be able to shed some light on this on Monday. Out of the blue, just like Jon. And just like B, who is still in the hospital. Are the planets out of alignment or something?

    These mysteries about our children, all of our children here at CN, are so frustrating! "What is it? How can we make it stop?" It seems that we are always asking those questions of our children's doctors, of ourselves, and among each other.

    I have a piece of granite inscribed with these words: "Life is not a problem to be solved, but a mystery to be experienced."

    I bought it in the early '80's as a gift for my boss, but I realized it was meant for me to keep as a reminder.

    Jon has been fine the last few evenings (and days) with no seizure activity. We are hovering. He is sleeping well. He seemed a bit overmedicated to us, droopy-poppy and glassy eyed, so we cut back on the Pheno. He improved today.

    His nurse drew his blood yesterday, and he was just beaming at her, when she walked into his room, even though he knew why she was here. She loves him so much, and the feeling is mutual.

    Jon's other nurse was working in the office today and called with the lab results, but she only gave us the Pheno results on the message she left. What about the Dilantin and Depakote? I called back, left a message, and no reply all day. I'm praying that the lab ran the D and D levels!

    I'm getting nervous, because Jon's 2 nurses are trying to reduce their time in the field by working in the office. Yesterday, Jon's nurse told me that she is considering training new nurses 3 days a week, and being in the field only 2 days. She has lots of regular patients, including Jon. I asked her, "What if we need you on one of the days that you're doing training?" She replied, "I will come by after I get done with training on my way home."

    We trust and love these two incredible nurses. They are like family to us. If both of them are reducing their field work, we're going to have to supplement at some point with unknown nurses, and start new relationships, and right now, I'm not in the mood for that. These two nurses have been seeing Jon since 2005 and 2009. That is a long term relationship, and Jon loves and trusts them, as do we.

    Jon's nurse also told me that things are changing in the medical world. Nurses are being told to not send patients to the hospital, unless they absolutely cannot stabilize them at home. In other words, if the patient is at death's door, call the paramedics, otherwise, handle it.

    No wonder they want to reduce their field work time!

    Many changes will be occurring in medical care, she says, with a greater focus on home care, and rehab care in an acute care facility, rather than a major full service hospital. This is coming with the Affordable Care Act, in an effort to reduce medical costs.

    Everyone in the U.S. needs to read the Time magazine article: Bitter Pill. It explains explicitly why the cost of medical care is outrageous. It's called gouging. Instead of stopping gouging, patients will suffer with inferior care.

    I see what is happening to B and his mom, and I fear now for what will happen the next time Jon has a crisis landing him in the hospital. Will he be shuffled off to an acute care hospital, with inferior care? And will the same be true for Jim and me under Medicare? The answer is yes.

    Our hospital is opening a fancy new wing in 2014, with state of the art surgical facilities and equipment, and a gourmet cafeteria. But they are discharging seriously ill patients, fragile patients, like Jon and B, and elderly folks, and people on vents, to acute care hospitals.

    It's a shock to the patient and family to be in this huge room, with lots of light, and one on one care, then moved to a small, crowded hospital, with one nurse serving 8 patients. Next stop: nursing home. It's downhill.

    Lots of money expended on emergent, extraordinary, and life-saving care, but much less is spent on long term care and recovery.

    I am a proponent of in home care. It's better for the patient and family in terms of comfort and quality of life, reduces the occurrence of hospital-borne infections, and it is less costly than hospitalization. But there are considerations: 1. not everyone can do well in the home setting, as they may need more intensive care than the family and home health can provide; 2. for home health to be effective, we need MORE home health nurses, as well as doctors who make house calls.

    Oops! Sorry, I got off on a tangent there. As you can tell, this is weighing on my mind heavily right now, as I peer into the future for Jon, Jim, and me. I guess I'm just trying to process it and steel myself for whatever awaits us.

    Meanwhile, I'm sending up prayers that Nick has no more out of the blue seizures.

    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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