Monday, May 11, 2009

My worst nightmare: Max had a seizure

A YouTube video of a child's foot during a focal seizure.

My biggest concern for today was whether or not Sabrina was OK; she started complaining yesterday that her throat (or "froat," as she calls it) was hurting. Dave was going to bring her to the doctor.

Both kids woke up in the middle of the night, and Dave took them downstairs for a half hour or so since they were wired. Then they all came back to bed and fell asleep. At about 6:30 a.m., Max woke up, screaming, a look of terror across his face. I don't think I'll ever forget that look. Dave grabbed him. And suddenly, we were reliving that time four years ago when Max last had a seizure. "MAX! MAX! MAX!" Dave was shouting, sounding panicked. Max's entire body was rigid, his left foot was twitching, he was staring fixedly at one spot. He was not responding. I called 911. Sabrina started crying. Dave ran downstairs with Max. I followed—still on the phone with 911—carrying Sabrina, then grabbed the Diastat injection we had on hand in case of seizures.

I was about to use it when Max's body relaxed and he stopped twitching. It all lasted about two minutes. The ambulance showed up, but the two medics didn't have much to say; we knew it would be better to bring Max to the neurologist who knows his history, rather than the ER.

We asked Max if he was OK. He nodded weakly, but he was so woozy. After that, he lay in Dave's arms on the sofa, limp. Then I cuddled him and he fell asleep on me for a half hour. By 8:00 a.m., he was up and back to his usual self.

I wasn't. You know I've said before that I'm terrified of seizures, a fear that I know many of you have about your own kids. Well, it happened. The last kind was a grand mal that went on for a good 45 minutes, so at least this one was shorter. But. Still. HORRIBLE.

I had to go to work, and it pained me to not be there for Max. Dave took him to the neurologist, who said Max looked fine. He said that it was the sleep deprivation that triggered a seizure—evidently, it can override the medication. It was a focal (or partial) seizure. Our neuro upped the medication from a teaspoon of Trileptal twice a day to a teaspoon and a half twice a day; he said the only change we might see is that Max could be sluggish for three days, until his body adapts.

Max is fine now, but this has shaken me to the core. Oh, and Sabrina has strep.

I know I've griped about the kids sleeping in our bed, but I have to say, it's a good thing Dave and I were right there so we could see the seizure and act on it.

I just pray, with the increased medication, it won't happen again. The silver lining is that Friday, we take off for the Disney Cruise, so it's good this happened now instead of then. Can you imagine if Max had a seizure on the cruise? Obviously, they'd have a doctor on the ship but I keep thinking, Dr. Mickey to the rescue?!


  1. Oh Ellen, this is Joyce. I can only imagine how you would be shaken to the core. I'm so glad Max is OK. It sounds like you and Dave handled it like pros. Despite the fright, it does sound like the timing was good. I am curious what the doc is wearing on the Disney cruise. Maybe you could just peek your head in to let us know if he/she is wearing mouse ears:)

  2. Oh my Ellen. I have been there you know that and seizures are horrible. Sickness can bring on seiures......maybe he has a touch of what Sabrina has? I am so very very sorry! They scare me too.

  3. Oh I am so sorry! I know how terrifying seizures can be. Sounds like you did an amazing job handling a very frightening situation. So glad Max is ok!

  4. I'm so sorry that this happened. I can only imagine how terrified you must have been. I hope the increase in meds does the trick. I so glad Max is ok.

  5. I'm so sorry that this happened right after you were having such a marvelous Mother's Day! It's great that he recovered so quickly, and I hope that you get a bit of recovery soon. I hope that this is the last of the seizures. I'll keep Max in my prayers.

  6. Oh, my God - I'm so, so sorry. I can't imagine the fear. Emmett is "at risk" for seizures but hasn't had one (that we know of). You just lived one of my biggest fears.
    I'm glad to hear that the neurologist wasn't too concerned.

  7. I'm so sorry. I'm so sorry that Max had another seizure. That it was from lack of sleep. That's why they think Alex had his initial seizures. He never slept...for 5 years. No sleep.

    We're at the point now where the "specialists" are thinking that he might still be having seizures during the night or even while awake, but they're so subtle, that no one is catching them. Mood swings, lashing out. Nothing that's explainable. Sigh. I don't like seizures.

    I hope the change of meds helps.

  8. Our thoughts are with you. Have fun on the ship...

  9. Have fun on the cruise! I will be keeping my fingers crossed that the medication increase will be enough to keep him seizure free.

  10. Ellen I'm so sorry to hear this happened to Max, especially after he hadn't had one for so long. Nathan's never had seizures but I have the same fear with his shunt, and always live in dread of it. I'm glad it was a short, partial seizure and not a grand mal. Hopefully this is the last one for at least 4 more years. I'll be thinking of you guys and hoping you have a fabulous, seizure free time on the Disney cruise!

  11. I'm so sorry to hear about Max's seizure, Ellen. I hate hate hate seizures and wish they didn't exist. I'll be praying that Max doesn't have to experience another seizure ever again. I'm so glad that he's okay. Hang in there.

  12. I hate, hate hate seizures. That's all I can say about it. I'm so sorry you had to deal with that.

  13. *Hugs* I hope you are all feeling better soon

  14. Ellen,
    That must have been terrible. Seizures are so scary. I am glad the neruologist was able to see him and things are better.
    Hang in there. I can only imagine how relieved you must be.

  15. I am so sorry this happened! I can't believe it's been four years... that must have been such an unwelcome surprise. So glad it stopped on its own! It sounds like even among the stress, you and Dave were right on top of everything. Seizures are just torture, for all parties involved. So glad to hear Max is his old self.

  16. Oh my! That is SO scary. Seizures are awful. My daughter has had them & it terrifies me. It scares her too - she has this scream that we never hear any other time - AWFUL!

    I am so sorry that this happened and hope that the increase in meds will keep seizures in check.

  17. I'm so sorry! Watching your child seize is a complete nightmare!! I'm glad it didn't drag on forever--I'll pray this is his last one EVER!!

  18. I'm so sorry about Max's seizure!!! I can totally get why it would be your worst nightmare. It's mine, too. I feel like I'm always watching and waiting for Gavin's first...hopefully he won't ever have one. I hope you've all recovered. It's a little unlike you to miss a know I was waiting up last night. ;-)
    Hang in there....

  19. I hope YOU are doing OK, Ellen. That's just terrifying.

    I am an absolute monster for "sleep hygiene" for the boys--I'm probably a little bit annoying about it, but they have a routine and a set bedtime and we don't deviate for pretty much anything, except at holidays and then the "nap time" gets upped. Not even if they're staying at Grammy's house in their room over there. I sometimes wonder if that has anything to do with not seeing any seizure activity in Buster to this point. I also think the reason I am like that is because I'm sleep deprived sometimes from working all nighters. I hate the feeling of exhaustion.

    I'm sure you have talked to the doctor about if you can up the dose in case it happens on vacation. They have phones on those cruise ships even when you're sailing (my parents called me from one on their anniversary cruise), so keep the number of the doc handy just in case (that way you don't need it). When we go on vacation, I bring a xerox copy of some of the kids' important medical records--the stuff I think might be useful in an emergency. I've never had to make use of them, so far, but I feel more prepared if I have them.

    You two are incredible parents. Talk about grace under pressure. Hope you don't see a repeat of that ever again.

  20. I share your dread of seizures. It's also one of the reasons why I am so glad to have my boy sleeping in my bed. Just in case.

    But we haven't gone there yet. We've been lucky.

    So, I am very, very sorry this happened to Max. What a dreadful way to start a day. It must have been terrifying for you all.

    I am glad that the seizure was at least, thankfully, very brief, and the neuro was available to see.

    Here's hoping the change in meds will mean NO MORE. I hope little Sabrina feels better soon too.

    And it is much better NOW than while on your much deserved hol later this week. You made me smile with your reference to 'Dr Mickey' - I love that even after facing your worst nightmare, you've still got your sense of humour.


  21. Oh my incredibly scary!! I've always been worried about seizures with D, too. She has never had one but the brain injury thing.

    I'm so so so glad that Max checked out ok. Enjoy your trip! You all REALLY deserve it!

  22. Seizures are so scary. I am sorry that Max has them, it is horrible you never know when it will happen. It is good that you have the Diastat at least you have a bit of a back-up if he has one.
    I hope everyone is okay for your cruise, it never fails when you have something planned someone gets sick.

  23. Thanks, everyone. Max is doing OK. Except for the EAR INFECTION. I'll post tomorrow. What a week.

  24. I'm so sorry he had a seizure; I can't begin to imagine what that must have been like to watch it happening. I'm glad he's doing better (except the ear infection now!) and hope the increase in meds will help!

  25. Hi Ellen,so sorry to hear that Max had a seisure.It is too scary when our children are ill i think!
    Sounds like you managed to handle it well.that kind of thing hits you later usually when its all calmed down!
    Hope Max is getting better.

  26. Although my response is late, wanted you to know I'm thinking of you. Seizures are so scary - they rock me right to the core and leave me on the edge of my seat for days afterwards. And that initial scream......gadz...we get that too and it's TERRIFYING. I hope the increase in meds does the trick for Max.

  27. I can so relate. A few years ago Marcus woke up on the floor with a swollen lip, and said he must have fallen out of the bed (which he'd never done). A couple of days later, I was just about to walk out the door to go to work and heard a big crash in his room. I thought he'd just lost his balance and called out, "Are you OK?" Then I heard that gaspy/gurgly sound. I rushed to his room and he was having a grand mal seizure. I assume that he'd had a seizure the night he thought he fell out of bed.

    What was astounding, not only to me but to the neurologist, was that he didn't have a seizure for 24 years after his brain injury! Fortunately he hasn't had another one since he started medication. But I understand so well that sickening feeling when a seizure comes on out of the blue, when you're least expecting it. I hope the increase in medication does the trick. All the best to your little guy!

  28. Thank you for your post! I am new daughter has CP and is now 4 yrs far has not had seizures (that we know of). I hope we are "in the clear" but I can never be sure, so I worry.

    I am glad everyone is okay.

    If you want to read about my girl, her blog is here:

    Hope the cruise goes smoothly!

  29. I hate that your family had to experience that, not once, but again! I can't imagine what I would do if Tristan had one.

    I completely understand why your children sleep with you.
    Thats why I have Tristan in the bed with me and will continue to do so.

    Take Care

  30. Evan had a couple seizures on Friday. I hate them, and I hate seeing them happen. I also hate that you never know when they are going to happen. Good move with the Diastat, when Evan had his 10 minute one in November I just froze, when i should have given diastat.


Thanks for sharing!

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