August 11, 2010

A fit of laughter, then confusion

For the past couple days, Bertrand has been acting strange.

He's been very tired, and he's been having lots of small myoclonic seizures.

But, he's also burst into fits of laughter.

We were in the grocery store when this happened:



He didn't really respond to us during it, and afterward, he seemed to go into a fog of confusion.

While we're happy he's laughing more, we don't like the confusion that sometimes follows.

We've been left with more questions: Is it the new medication, Zonegran? Is his Keppra too high or too low? Should we put him back on the ketogenic diet?

As always, we're going to take our scientific approach to determining the cause of the seizures and the exhaustion.

10 comments :

  1. Cristina, I hope this isn't the case, but last year I remembered reading on the keto group that a few of the kids had a type of seizure that made it appear that they were laughing. They described the awkwardness of the kids seeming to laugh for no reason (as you can imagine, this can be awkward in some social settings) when in fact it was a type of seizure. Might be something to ask to the neuros about? I'm so sorry if I am adding to your stress right now. :(

    ReplyDelete
  2. I looked up a little more to refresh my memory... "gelastic seizures".

    ReplyDelete
  3. With Jade, every time we added a new type of anticonvulsant we got a new type of seizure. I sincerely hope you figure this riddle out (through your scientific approach, of course) and that it results in something positive.

    ReplyDelete
  4. The laughter is so nice to hear but that confusion is definitely unsettling. I hope that you figure it out soon. I love you guys so much. (also I wish I was a more useful type of doctoral student so I could help) <3

    ReplyDelete
  5. I've been following your blog for a little while but haven't ever commented. We have a 2.5 yr old son with tuberous sclerosis complex & hydrocephalus. One of his daily seizure types is a gelastic seizure. It is emotionally harder than the rest for us because the average person doesn't recognize it as a seizure and often celebrates it. It didn't clearly show on his EEG for a long time and his neuro didn't think it was a seizure until he finally had one during EEG at night while sleeping.

    Anyway, just wanted you to know that I related to this post and what you may be experiencing. Our neuro tells me that gelastic seizures are rare, at least in the TS population.

    Bertrand is an amazing little man! Sending him positive thoughts from Iowa.

    Laura
    http://www.carepages.com/carepages/codygarrett

    ReplyDelete
  6. oh poor baby. I'm almost sure it was a seizure. Before watching the video I thought so but you can tell that is a laugh without mirth. I would email this video to his neurologist. Poor guy, I hope that he gets seizure control soon.

    ReplyDelete
  7. Thanks, Fawn, Michael, Kristen, Laura and Amy! I am glad we weren't the only ones disturbed by these laughing fits. You all gave me the courage to email our neuro the video with the explanation. Since gelastic seizures are very rare, our concerns were dismissed before, but maybe the video will better illustrate the issue. He has never had one on an EEG, but I think he might need an MEG for those seizures to show up anyway.

    ReplyDelete
  8. Dear Cristina!
    My name is Oksana, i am from Ukraine. i been reading about Bertrand last one year... Me and my family praying for his health and when you been with Bertrand in hospital i cry a lot.. I love him so much!!!
    I have son 19 month old with epilepsy and i truly know what is this...
    about your video - i am not sure that this is seizures... you need to do EEg exactly in this moment! i think this is kind neuropatya... we had the same....
    i have question - did Bertrand ever been completely without drugs?
    you know what we did ... when we had more then 150 per day -and we had no life.. we just stopped giving him all the drugs in one day!!! craziness ? maybe....but it went down and after two months no seizures . I believe that all this medicine are poisoning his body more ! then seizures making damaging ...
    Dear Cristina, i asking you, please , talk to your neuro and try to give him less tablets as it possible ... just to see...i feel it it will must help Bertranchik!! He have such smart eyes!!! Trust me!
    My boy also was in hormones therapy 2 times and in ketogenic diet ,,, all drugs,,,,,,,nothing helps.... nothing stopped

    maybe it will help... please try....

    with love,Oksana and little Gordeyka

    ReplyDelete
  9. Cristina, you mentioned in your comment that Bertrand might have an MEG. My son is going to have his MEG (sedated) on August 30th. If you have any questions about the test, I will be more than happy to answer them for you.

    ReplyDelete