Discussion in 'The Watercooler' started by slsh, Apr 28, 2011.

  1. slsh

    slsh member since 1999

    Could use some good thoughts, please, for my Boo. husband forgot to give him medications a week ago Sat night, and Boo had a sz Sunday morning. Pretty typical sz for him - 10 mins, done by the time EMTs got here, nothing more while in ER, normal labs, then home. husband is still alive - I showed great restraint because I knew he felt horrible, though of course my impulse was to rip a few of his limbs off to beat him with. ;)

    Thank God Diva is on spring break this week. I was working Tues morning, Boo was in family room watching his MTV, Diva had bought into blatant bribery and was sorting laundry in family room. She hollers at 11:00, "Mom, I think Boo's having a seizure." Yep. Go into the routine, get him on floor, give Diastat, crank oxygen, Diva calls 911. They're here in 2 minutes (I *love* our EMS guys). Scoop and run. Boo's still seizing. I get to ER where they make me *wait*. ARGH! I get back there finally and he's still seizing, though no one is doing much. Some little MA came in to take his temp orally, and I told her that a) he can't do oral temps anyway because he doesn't close his mouth and b) he sure as *heck* can't do it when he's still SEIZING!!!! I'm explaining to resident that nystagmus and unresponsiveness equals seizure, she's putzing around, and then he goes back into full body convulsions. It was just awful. They finally got him to stop, after 50+ minutes. 4 mg of IV Ativan, plus the 10 mg of Diastat I gave, plus the seizure - the kid was wiped out.

    His PCP wanted him on monitoring - I tried to get him transferred to her hospital, but there were no beds, so he was admitted to our local hospital, *not* on monitoring, so I spent the night with my hand on his chest. Medical care at it's finest - not. I finally parked his wheelchair in the hall yesterday afternoon to let them know we *were* leaving, LOL. Got home about 6 last night.

    No one knows what's going on. No infections, no aspiration, nada. Nutritionist came in and told us he had the best protein levels of anyone she'd seen in forever (yea, we're doing *something* right). They kept telling me they had to send the tegretol levels out - bologna. Found out last night they never even drew them!!! STAT level was fine as of last night. We've increased the Keppra now to 1000 mg bid, continuing Carbatrol at 400 bid and Topamax at 200 bid.

    I'm scared. I hate not knowing why this is happening. I thought since he'd been stable for so long that we'd just continue on as we are. I want a reason, and a fix. I know I'm not going to get it.

    Diva was a champ. It's been probably 6 or 7 years since she's had to endure the whole ER scene, and she was a bit teary-eyed, but I think she handled herself just great. She did ask me what happens if they can't stop the seizure - I couldn't bring myself to answer her - it's my deepest fear and I just can't go there. She apparently did ask husband Tues nite at home, and he told her.

    Boo as usual is just the toughest kid I know. He was flirting with- all the nurses and lab techs, LOL. He does love women. He's really crabby and uncomfortable - I think Ativan hangover combined with- increased muscle tone, residual from seizure. I'm going to try to get him into PCP today, just to touch base with- her. We had neuro appointment yesterday at 10:15 - obviously didn't make that.

    If you could send up a good thought for my boy and his wonky brain, I'd appreciate it.
  2. Hound dog

    Hound dog Nana's are Beautiful

    Aw Sue, sending many warm (((hugs))) and saying prayers.

    Even with a stable person, I've seen a skipped dose of medications bring on a seizure. But it is possible that his doses may need tweaked. Did they do an EEG before releasing him?


  3. tiredmommy

    tiredmommy Site Moderator

    {{{SLSH}}} {{{Boo}}} I'm sending just the best thoughts and prayers I can. I too hope that he stabilizes quickly. {{{Hugs}}}
  4. JJJ

    JJJ Active Member

    ((((Hugs))) I'm hoping it was just the missed medication and husband will not forget again!! I'm sure he feels awful.
  5. KTMom91

    KTMom91 Well-Known Member

    Poor guy...hugs and prayers going out.
  6. HaoZi

    HaoZi Guest

    Poor Boo, sending best wishes his way!
  7. AnnieO

    AnnieO Shooting from the Hip

    Awww hon. Give Boo a hug for me. And Diva, too, while you are at it - sounds like she did a great job.

    When you mentioned that she asked what would happen if he didn't stop - yeah, I have tears in my eyes. I wouldn't be able to go there either.
  8. runawaybunny

    runawaybunny Guest

    Hugs and prayers going out to you and your family.
  9. Star*

    Star* call 911

    Sending hugs and prayers. I have been going through this with our middle dog. I can't imagine what it would be like with a child. You have all my sympathies and love. Hug Boo for me too.
  10. smallworld

    smallworld Moderator

    Sending positive healing thoughts and many gentle hugs across the miles.
  11. rlsnights

    rlsnights New Member

    You probably know everything there is to know about nutritional support of people with seizures or who are on AED's but it's hard to hear about someone suffering and not want to try to help. So here's a link to a short article on the University of Maryland Medical Center's website about seizures that specifically discusses Nutritional supplementation and alternative medicine options including herbs. Hoping there's something there that might help.

    Hugs. Glad to know he is better.

  12. busywend

    busywend Well-Known Member Staff Member

    AW, Sue! I am so sorry about Boo's seizures. I hope they figure it out quick. My goodness - that hospital sounds awful.

    Sending many hugs and prayers out to the SLSH family!!!
  13. Ephchap

    Ephchap Active Member

    Sue, definitely sending positive thoughts and lots of hugs and prayers to you and Boo and your whole family.

  14. Marcie Mac

    Marcie Mac Just Plain Ole Tired

    Lots of positive vibes being sent Boo's and your way

  15. Steely

    Steely Active Member

    Tons of positive energy is being sent your way.
    Perhaps it is just a matter of tweaking his medications.
    When my Dad had his first seizure, which indicated his brain tumor, it took them hours to get the seizures to stop. It was so scary to watch. At the end they had given him enough Ativan to sink a ship, tons of Haldol, and something else, can't remember.
    Many hugs that this will get better soon.
  16. DDD

    DDD Well-Known Member

    I just realized that I hadn't posted...somebody must have come in the room and I "thought" I had. Nothing too important to say, lol, but I can fully understand the anxiety of having a child with seizures. been there done that. Sadly I also relate to hospitals where the parent serves as the expert and monitor. I'm so sorry you had the experience. Let's hope it was simply husband's error that had this result. Sending supportive hugs. DDD
  17. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    Sue, you are one heck of a warrior mom! Sending hope it was the missed medication that caused the seizures.

    Positive thoughts and hugs for you all.

  18. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Oh Sue, give Boo a really soft hug from me. Then hug yourself. I am so terribly sorry! He is such a trooper and you are such a warrior mom that I know you will get to the bottom of what is going on.
  19. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Sending hugs and prayers Boo's way. I hope things stabilize quickly!!
  20. slsh

    slsh member since 1999

    Thank you all. I'm still a mess. Boo started to perk up late today.

    The medication goof happened over a week ago with- seizure #1. I don't know if somehow that lowered his threshold so much that it allowed #2 to happen or what. I did get him into PCP today, who of course had no answers for me since every test that was done was spot-on normal, including all his medication levels. We don't bother with- EEGs anymore - his spasticity is so bad that even sedated into oblivion, he still is constantly moving and the EEGs are too chock-ful of artifact to pick up anything meaningful. I think his neuro is the only one who might have an answer, but I kinda doubt there really is an answer, which makes my control-freak self absolutely nuts. I want defined problems so we can figure out the solution. "Wait and see" and "I don't know" have to be the 2 phrases I detest the most.

    I think part of what frustrates me is that, in the middle of the crisis, we're at the mercy of professionals who don't know Boo and who don't know his baseline. It doesn't instill a lot of confidence when I'm having to explain that he's still seizing to an MD. There is one RN in the ER who miraculously has been there the vast majority of our visits over the past 11 years, so he's a big help. Then, when we got to the floor Tuesday night, some rocket scientist had ordered heparin because Boo wasn't "ambulatory". Maybe I'm nuts, but does it make sense to give a blood thinner to a person who just had a massive seizure? Do we really want to add blood loss to the problem? I understand the worry about clots in sedentary folk, but.... can we put it in context here? Boo's activity level is minuscule on a good day. And of course the nurses think I'm outta my mind to question a physician's order. I'm also frustrated that so many medical professionals assume Boo's near-comatose at baseline. The on-call *neuro* was actually shocked when Boo laughed at something she said... "oh... he seems to understand me." Uhhhh, yeah. And then the followup call today from a nurse on the floor to see how he was - she didn't want to talk to me, only wanted to talk to him. Sigh... do you *have* his chart in front of you???? He has CP. "Oh, I'm soooo sorry."

    We do have this down to a science. He always has a spare g-tube, adapters, and syringes in his backpack, because somehow hospitals never have adapters or g-tubes. I have learned to take his medications with us, because hospitals only carry generic medications and I worry about differences in formula between brand name and generic being just enough to lower his threshold. They will let us use our medications once the pharmacy verifies them.

    The fear is what's just eating me up. I know I need to let it go - nothing I can do besides what we're doing, what is going to happen will happen, but... I just can't let it go. I'm back in high-alert mode, and it's exhausting. Every little noise he makes, I jump. He's in bed right now, giggling. *Giggling*. And I jump up to make sure he's okay. He greets me with his evil little grin because he *knows* I'm on edge and can be played like a fiddle. And the one and only word that he says really clearly? Mom. He's been saying that a lot the last 48 hours. I think it's a combination of wanting to make sure I'm alert, wanting to make sure I'm there (though I was touching him somewhere on his body the entire time he was in the hospital), and wanting me to fix it, which I really wish I could.

    This too shall pass, hopefully. I'm just so scared. You guys are the only ones I can share it with-, and I do appreciate the ear (or eyeball ;) ).