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Pretty sure Jake had a Tonic Seizure
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Thread: Pretty sure Jake had a Tonic Seizure

  1. #1
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    Pretty sure Jake had a Tonic Seizure

    I have suspected that Jake has been having gelastic (laughing) seizures for some time; however I think I may have witnessed my first tonic seizure yesterday afternoon.

    I was driving Jake to his brother’s baseball game and looked back and noticed that he appeared to be shivering. It is not uncommon for Jake to get cold and have goose bumps, but there were no goose bumps this time, he was just shivering and had a strange look on his face. Immediately after the “episode” he had a BM. I had to change him in the van and he was not happy. I got him out of the van and he seemed agitated for another 15 minutes or so.

    So I finally googled “shivering and seizures” and I came across Tonic Seizures. Sure enough these are seizures where the child stiffens and may look like they are shivering. Check. After the seizure they may have a BM. Check. They may also be in a fighting mood. Check. I had no idea about the BMs/vomiting with seizures. I had always heard of sleepiness but he never appeared tired yesterday so even though I suspected seizure enough to google it, I had no idea that everything that happened had to do with a seizure.

    I called and talked to the nurse at our pediatrician’s office. At this point I am comfortable waiting and watching, but am dreading the inevitable neurologist appointment along with possible testing. I just can’t imagine Jake sitting still for an EEG.

    I am just glad it wasn’t a grand mal for our first go at seizures.
    Tara

    Mom to Hannah and Luke (9 - twins) unaffected and Jake (7) MPS IIIA

  2. #2
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    So sorry to hear about Jake seizure. I am glad that it wasn't an grand mal seizure for the first time for you to go through. It is shocking enough with the tonic seizure I am sure. Hoping for you peace, and calmness soon after this new added problem to attend to.
    Carol
    Aunt and Guardian:
    Karima (5-31-88) Age 24
    MPS VI Maroteaux-Lamy

  3. #3
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    How old is Jake now? I have heard many times that children who get MPS3a with 10 years of seizures. My son was 10 years old in January. He has seizures since March. Grand mal! EEG does not show anything! Drugs do not help!
    Every seizure throws him back. Since he has seizures, he is doing much worse.
    It scares me. I hate these attacks.
    send greetings
    orphan
    with son 2004 (mpsIIIa), son 2005 and daugther 2010

    Stell' dich täglich dem Wind, dann trotzt du dem Sturm. Geh' lachend durch den Regen, und du überwindest die Flut.
    You fight the wind, then you defying the storm. Go through the rain laughing, and you overcome the flood.

  4. #4
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    Quote Originally Posted by carkarrucker View Post
    So sorry to hear about Jake seizure. I am glad that it wasn't an grand mal seizure for the first time for you to go through. It is shocking enough with the tonic seizure I am sure. Hoping for you peace, and calmness soon after this new added problem to attend to.
    Thank you. Ever since Jake was diagnosed I have operated on when will he have his first seizure, will he have seizures. I know of kids that have gone grand mal on the first one. I guess I should be thankful he is breaking us in slowly...,assuming this isn't the precursor to something big!!!!
    Tara

    Mom to Hannah and Luke (9 - twins) unaffected and Jake (7) MPS IIIA

  5. #5
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    Quote Originally Posted by orphan View Post
    How old is Jake now? I have heard many times that children who get MPS3a with 10 years of seizures. My son was 10 years old in January. He has seizures since March. Grand mal! EEG does not show anything! Drugs do not help! Every seizure throws him back. Since he has seizures, he is doing much worse. It scares me. I hate these attacks.
    Jake is 7 1/2 years old. It will be interesting to see what happens over the next few weeks as far as if he has more. I have heard lots of stories if kids going through the trouble of an EEG only to have nothing show up. I am not sure how I will feel about it if they want to schedule one, especially if it is a big waste of time or Jake does not cooperate.

    I am sorry you are having to deal with grand Mals. I understand you are not alone with the setbacks.
    Tara

    Mom to Hannah and Luke (9 - twins) unaffected and Jake (7) MPS IIIA

  6. #6
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    Tara, so sorry to read this, seizures are just the worst thing I don't know much about tonic seizures - Georgia's first ever seizure was tonic clonic (grand mal), she was 13 years old & we nearly lost her, she ended up in status & had to be intubated & in PICU. She was fitting continuously for over 2 hours

    Georgia had many EEG's & NONE of them ever showed seizure activity & yet she was clearly epileptic - so you need to be aware that this can be common for our kids.

    I too am glad it wasn't a grand mal & I hope & pray for no more for Jake
    Louise
    Mum to Georgia (16 yrs, 11.7.95 - 19.2.2012, MPS IIIA) and Christopher
    Fly high sweet Georgie Pie

    Georgia’s webpage

  7. #7
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    Jake is in a special needs summer camp and I felt like I needed to make them aware of Jake's possible seizure last month. Today I picked him up and his attendant said that she thought that he might of had another one and described it to me. Tonight she sent me this text....

    "I talked to my mom about Jake's crying (with no expression) /shaking and tongue out today and she says that it sounds like it could be a seizure (she taught special ed for 36 years so she's seen things like this before) If you want I can type out everything on my iPad and keep track with dates of when/what time of day/ what he was doing... She said that a lot of times after seizures kids are grumpy or tired, but I told her today Jake just kept going and laughing after!"

    My question has to do with tiredness or sleeping after seizures. The seizure I think I saw Jake was limp and fussy for a little while but it passed quickly and he never got tired. Apparently he did not get tired today after the episode either, just fussy for about 10 minutes. Is is common for kids to recover from some types of seizures rather quickly?
    Tara

    Mom to Hannah and Luke (9 - twins) unaffected and Jake (7) MPS IIIA

  8. #8
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    So sorry Jake is going through all of this. The only times we have seen Logan post-ictal (lethargic, tired, drooling, reduced motor skills), we didn't see the seizure so we have no idea what kind he had. He has not had a tonic (that we know of) or a tonic-clonic seizure, but he has absence seizures, laughing seizures, autonomic seizures, and myoclonic seizures. Most of the time, he is fine when they are over.
    Robin
    Mom to Avery, 14 yrs
    ^^Logan^^, MPS II (6/14/03-3/15/15)
    and Kara, 9 yrs

  9. #9
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    Sorry to hear this, Aisling didnt start having seizures until she was 10. We are managing well to keep them under control with epilim. They started her on tegratol and she had a bad reaction to it she is allergic to it. We took her off all med and took a wait and see approach, she had another one 3 months later and we started the epilim, it works great, she isnt as wipedout either as she was with the tegretol. We thought the lethargy and unsteadiness was due to the seizure turns out it was the tegretol that was zonking her.

    If you get someone good the eeg should be ok. Kids with sanfilippo will show abnormal brain activity regardless.
    before she had her first seizure, Aisling would burst into fits of laughter, I noticed that when she would stop laughing she had a very sad look in her eyes. She would also "twirl" walking around and around in circles. Its pretty sad but when we would hear her laughing we knew a seizure was probably on its way.

    hugs x
    Best Wishes

    Celia,
    mom to Aisling 13 (MPSIIIA) and Peter 10

  10. #10
    I think my daughter ( MPS 3B, 9 years old) had a tonic seizure last night. She has not been right all week?
    It lasted for about 5 mins and a few hours later she seemed fine?
    What do we do in these situations?

  11. #11
    Also for jake and others - how often are these seizures occurring?
    And it appears that EEG doesn't show anything up and is the medication actually worth giving or is it more guess work?

  12. #12
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    Jake had his first tonic seizure at the end of June and it lasted for about 2 minutes. We saw a neurologist at the end of July and decided to treat with Zonegran because she said that seizures are actually painful when the kids are having them. We decided to start the medicine. She started Jake on a low dose. It took over a month to get to the full dosage the doctor wanted him on. He was at the full dosage for two weeks and he had his second tonic seizure at school.

    This second seizure lasted from started to finish 15 minutes. He does not convulse with eyes rolling back. Jake shivers like he is cold, without goosebumps, eyes are open and he is alert, at some points during the 15 minutes at school he whined and was unhappy. He had a bowel movement both times he had a seizure and became limp after the seizures and also irritable.

    Jake has only had two seizures and the doctor said the second one was not unexpected because you never know what the right dose of medication is needed to control them, you have to do trial and error. So she upped his dosage after the second seizure and he has not had another one for 6 weeks.

    After Jake had the two seizures he pretty much returned to himself, did not sleep, just seemed a little tired. I think it is common for kids to take several days to recover.

    The medicine Jake takes really has had an effect on him. He is overall calmer and sometimes just seems zoned out or checked out. We knew this would be a side effect. As a matter a fact, the first few weeks when he was ramping up to the full dosage I thought we would never get to the full dose because after the first few doses he slept a lot during the day. His body has adjusted to the medicine so all is good there, but he certainly has a much calmer disposition.
    Tara

    Mom to Hannah and Luke (9 - twins) unaffected and Jake (7) MPS IIIA

  13. #13
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    As far as what to do when she is having a seizure, just make sure she is in a safe position and no standing. If she is laying down, turn her on her side in case she vomits so she does not choke on it. Basically, just keep her safe and they usually just come out of it. If she starts to have trouble breathing or her lips start to turn blue, you need to call the paramedics.
    Tara

    Mom to Hannah and Luke (9 - twins) unaffected and Jake (7) MPS IIIA

  14. #14
    Many thanks . This is really helpful.

  15. #15
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    Tara, Just visiting again and saw this thread, I want to let you know that the first 2 or 3 years of Jesse having seizures, he was never tired afterwards. within 10 minutes or so, he was back to running around being his usual self. The tiredness started happening when the grandmals lasted longer than we liked and we had to use the rescue med (diastat> rectal valium) to end the seizure. The diastat would make him sleep for hours. Better that, than what the seizure was doing to him. Many times he stopped breathing for 30 or more seconds during a seizure by age 13 yrs. Diastat was and is our rescue when he one still now and again. Fortunately we only have them 3 or 4 times a year on average now. Thank God!!
    God never gives me more than I can handle, though at times I wish the load was lighter :-)
    Love to you all!


    Patty and Jesse
    MPS III A


    http://www.caringbridge.org/md/myjesse < click here for Jesse's website

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