August 18, 2010

Gelastic seizures?

Bertrand has continued to get "foggier" as the effects of the steroids attenuate, and his seizures return.

We're also trying to figure out if he's having gelastic seizures.

These episodes seem to come at random, and I captured a couple on my cell phone camera.

Here's one in the hospital registration room:



Here's another one outside at Barbacoa:



What has us concerned is that there are no (obvious) triggers for these episodes.

He'll be sedate, or even a little bit grumpy, and then he bursts into these moments.

Is he genuinely happy? Or are there gelastic seizures?

Are we being paranoid?

96 comments :

  1. It doesn't sound like being paranoid given his history. Does he always have confusion following these episodes or other indications of post-seizure behavior?

    You and Matt know B better than any other people on earth. If your gut tells you this is abnormal for him, then that's a big clue. Let's just hope it's a new behavior and not a new seizure. And likely only time will tell which it is.

    You can tell his seizures are coming back little by little and you are already taking immediate steps to try and prevent them regaining their foothold. Regardless of what is the cause of this laughter, it sounds like you're doing everything precisely as you should be doing, Cristina.

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  2. Is it happening often enough that you may catch it on EEG. I guess I think we know our kids best and if it feels not "normal" there's probably a reason. My son's gelastic seizures don't appear to have an obvious trigger and there is no post ictal phase. He literally seizes and goes back to what ever activity we were doing. We did notice when we tried to wean his Vigabatrin last fall that they dramatically decreased but unfortunately he started having spasms so we had to restart it and the laughing seizures have slightly increased again but still not as bad as they were when he was little. They are very hard emotionally. Sometimes they feel so real. They may happen in the middle of play and seem appropriate but then it becomes clear that he isn't really responsively laughing. Several of his therapist have made comments over the last couple years about his cute seizures. Maybe cute to them but not to us. I hope this proves to be innocent for you guys. Here's a link to video of Codys gelastics if that helps at all. (Hope it works still)
    http://www.onetruemedia.com/shared?p=9f84298a47ebb72ae006da&skin_id=701&utm_source=otm&utm_medium=text_url

    Good luck
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  3. Agreeing with above - don't worry about being paranoid. You are careful and informed parents.

    I thought it was good news that you are okayed to begin diet treatment again. Hoping that takes effect as he comes off steroids.

    Barbara

    ReplyDelete
  4. okay, now say it to me...you may think you're going crazy, but you're not. :)

    Just paying it forward sista!

    If you are paranoid, then I need to be committed. You are just an awesome, aware, and incredible parent.

    ReplyDelete
  5. My daughter has episodes like this, that we think are seizures as well. The laugh sounds weird, different than her normal laugh. Is this what Bertrand sounds like normally when he laughs? Does he take big gasp breaths while laughing normally? Our neuro says galastic seizures are uncommon but that they are more than likely underdiagnosed.

    ReplyDelete
  6. Yes, the laugh sounds weird and unlike his usual laugh. His eyes are unfocused and pointed upward-ish. He doesn't respond at all to us during them. Afterward he is a bit disoriented but kinda gets back to doing what he was doing before. It has even happened a few times in his sleep.

    It is creepy.

    Fortunately, these episodes only happen once or twice every few days. Unfortunately, this means we're unlikely to ever catch them on an EEG. After watching videos of other children's gelastic seizures, we are now pretty convinced that's what these episodes are.

    Bertrand is approaching age 3 when most brain myelination should be complete, so we shouldn't be surprised that his seizure types are changing. After all, we started the new year off with tonic seizures for the first time. Maybe we can hope this is the extent of his evolving seizure types?

    ReplyDelete
  7. Hi. I think you should totally trust your gut on this.... Are they controllable by tinkering with his meds? I had never heard of gelastic seizures.

    Christina, I am so excited for you guys about Duke. Dr. K is an absolutely incredible woman, and the entire staff at Duke made everything go by smoothly. Max actually had a great time on the day of the infusion‚ there was both an art and music therapist on staff. And the infusion itself was almost a non-event, after all the buildup, just a 15-minute IV drip.

    You'll have some time free, and the park nearby (can't recall the name) is very relaxing to walk around. If you're up for it, there are great BBQ places, our favorite was The Original Q Shack.

    Christina, you are an amazing champion and cheerleader for Bertrand. Who, by the way, is going to charm ALL of the nurses, I am sure.

    ReplyDelete
  8. I am scowling at my calendar right now! While you are at Duke, I'll be in Kentucky. I would rather bring you lunch, say hello, be your errand girl, squeeze that sweet little boy, introduce Ben to a new friend!

    We do almost everything at UNC. I don't know Dr. Escolar, but if I need to get Ben in to see her, consider it done. Ben sees Dr. Muge Calikoglu (genetics) and Dr. Joshua Alexander (rare diseases and disorders). His pediatrician is affiliated with Duke, which I concede to be a top-notch school of medicine/hospital despite my status as a native Kentuckian. Speaking of the Commonwealth, what a lovely, small world this is! I'll give a shout-out to your parents while we're in the 'ville!

    Thank you so much for sharing Bertrand's gelastic seizures with us. I wish you still had no idea what that even means, but I hadn't heard of them either. I am glad to be aware.

    I adore your boy, your blog, and you! You ARE an amazing champion and cheerleader for Bertrand- inspiring! I am so grateful for the opportunity to be in touch with you and read his story. Hope you have a safe, successful trip to Raleigh. I can't wait to hear all about it!

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