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Thread: Gelastic Seizures.

  1. #11
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((swilliams1265))))))

    Welcome to Brain Talk Stephanie!

    My goodness, 50 seizures a day! Bless your heart! Are you still on Keppra? Are you stable now, or do you still have Gelastic seizures?

    Thank you for providing the information about Gelastic seizures. When my sons had Gelastic seizures, they didn't experience many of the things described. I never noticed their stomach vibrating, nor any stomach distress (no vomiting, for example). It makes sense, however, since there is a brain in the gut. And there are such things as abdominal seizures.

    My sons would just suddenly begin giggling uncontrollably, sometimes to the point of nearly losing their breath.

    I hope your seizures are under control now.

    Hope that you'll stay with us and get to know our friendly, caring members. I'm looking forward to getting to know you.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  2. #12
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((johnmcd75))))))

    Welcome to Brain Talk!

    I'm so sorry that your son is enduring such an arduous ordeal with his seizures. Adverse reactions to medications makes it so difficult to treat, I know so well.

    Have any of your son's doctors thought outside of the box? By this I mean, exploring less than obvious potential causes for your sons seizures, such as environmental factors, allergies, food intolerance, a virus of some kind. No evidence of a head injury from soccer as a possible cause? Pesticides used on soccer fields to keep the grass green? I'm guessing that his folic acid and Vitamin B levels have been checked. I'm sure that he's had an extensive blood work up having been hospitalized so many times.

    Have any of your son's doctors discussed non AED options to control your son's seizures? The VNS? The Ketogenic Diet? I have no idea whether either one would work to control Gelastic seizures, but it can't hurt to ask.

    How about alternative, naturopathic therapies, like acupuncture or herbal supplements? Most physicians don't go there, but occasionally you may find one, who is open to the possibilities, when traditional medicine is failing.

    My heart goes out to you, and to all parents, whose children are struggling with seizures. For 22 years, my son, Michael, seized nearly every day. When I say, "I understand," I truly do understand.

    Please join us at Child Neurology, where you will meet some fantastic parents, who will offer you support, compassion and a world of knowledge and experience.

    http://www.braintalkcommunities.org/...hild-Neurology

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  3. #13
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    Rose,

    I am currently not on any medicines. I had a lot of adverse reactions to Keppra. Keppra Rage was one of them. For the most part my seizures are okay. Not right now though. I am having so many and it is so hard to get into a neurologist. My insurance no longer carries my old neuro so now I have waiting a week for a referral having as many as 100 seizures a day. On the bright side, I am getting abs of steel from all the laughter. Thank you for your kind words.

  4. #14

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    How did your son's visit to the doctor go?

    We are currently at Stanford and have Doctors at Stanford and UCSF working to figure out a solution. Two days ago he had 40-50 gelastic seizures and a generalized tonic clonic seizure. Since he has had 40 each day and is on 2 different meds. Apparently thee are very hard to control.

    Let me know how everything went, I can get you any info from our end as we have seen a lot over the last 2 months.

  5. #15
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    ((((((Stephanie))))))

    I'm so sorry that you are having 100 seizures a day! To me, that constitutes status, and you should be seen immediately by a neurologist, if not admitted to a hospital for treatment. Please call your insurance company tomorrow and demand a referral to a neuro, explaining that you are seizing nearly non stop. In your shoes, I would call them every day and hound them until they made the referral.

    Options need to be explored for you, like alternative treatments, a VNS, other AED's, diet changes, hormones, anything and everything needs to be discussed as a possible treatment for you. What would happen if you showed up at the ER? Would your insurance cover it?

    My heart just goes out to you, and to all of our BT friends, who are coping with unrelenting seizures. I know, from my son's intractable seizures of 22 years, that untreated seizures beget more seizures, changes in seizure types, and an increase in frequency and duration of seizures. It's called the "Kindling Effect."

    One neurologist described it to me as a record with a scratch, and the needle gets stuck on that scratch, until it wears a groove so deep that it skips the scratch to the next groove. Then wears it down, and skips again.

    But the journey to find the treatment, with the most efficacy and the least side effects, is fraught with so many disappointments and failures. It is incredibly frustrating.

    My prayers are with you that you get a referral immediately. Please call your insurance tomorrow and insist that you need help right now.

    Keep us posted.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  6. #16
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    ((((((johnmcd75))))))

    Is your son hospitalized at Stanford? You are certainly with two outstanding universities, where your son should be receiving top notch care.

    One reason why Gelastic seizures are hard to treat may be because these seizures are considered rare. "Rare" means that doctors see fewer patients with the condition, which translates into not knowing what to do when a patient presents with that condition. "Rare" means that less research is conducted on the condition, and less funding is funneled to researchers for that condition.

    This is why I mentioned thinking outside of the box. Doctors need to become detectives and search for any and all clues. Could it be that these seizures are coming from the gut and not the head? I have no idea, but it's worth investigating. And I hope that your son's doctors do just that.

    So often, a doctor's first approach is, "Take this." The first-line drug for treating seizures, or the most popular AED at the moment. If that works, great. If it doesn't work, then, "Take this." Or, "Take these." It's as though the cause or the type of seizure is irrelevant, because the treatment will be the same regardless.

    Your son and you are in my prayers. Please keep us posted.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  7. #17

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    Thanks Rose-
    The docs are great here. They are thinking it may be an inflammatory response since his seizures came on so quickly and "out of the blue." Last frontline med, depkote, failed as suspected. Will try something new.

    They are rare but it seems as though everyone wants to see them. He has seen more doctors than I could have imagined.. Immunologists, dermatologists, neurologists, Allergists, gen peds, etc.

    Thanks and god bless

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    Default Still searching for answers.....

    Hi, its been awhile since I posted anything. I just wanted to say thank you to everyone who shared their own personal stories. I feel for each and every one of you. Having Epilepsy or caring for someone who suffers from it, is a daily struggle. Since my son has been diagnosed with Complex partial Epilepsy with "Rare" Gelastic seizures, its been quite a journey. I have been his advocate and have educated myself more than I could have ever imagined. As for my son, he has been a real trooper. He has become more comfortable with his condition. There's even been times when he tried to lift my spirits when he seen I was having a tuff time watching him go through such a difficult thing. Telling me not to worry and everything will be ok as he gave me an awkward, but yet comforting hug!! (If u have a teenage son, u kno what I'm talking about! Giving u a hug without getting to close or being to girly!!) :-) Anyways, an update on my son. We went back to his neurologist on June 28th, his Keppra was increased. His seizures continued. I called back, again, and his Dr added Trileptal. So he now takes 1750mg twice a day of Keppra and 1200 mg daily of Trileptal. Again, with no improvement. So, we are back for a 2nd MRI Tuesday July 16th. They will again be looking for brain lesions or some kind of abnormality. Hopefully we will be able to find something that will help us better understand why he has been having seizures, out of the blue. If its a normal MRI, we will continue to look for answers. If there is even an answer to be found!!!

  9. #19

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    I'm very late to this thread, but I'm wondering if there are any updates. Our 7 year old daughter was diagnosed with complex partial and gelastic seizures this past November. After unsuccessful attempts with Keppra and a few other drugs, Trileptal seems to be working. However, she has now been diagnosed with ADHD and Oppositional Defiance Disorder. We are wondering whether there is an underlying problem that is causing both these problems and the seizures. But the doctors never have been able to give us a root cause for her seizures. Her EEG was abnormal but her MRI was normal. We are trying to get the doctors to take a look at her MRI to confirm that we aren't dealing with HH or another type or structural problem that is causing her the trouble. But it's hard to get their attention when her seizures are well controlled with the Trileptal. I'm wondering if anyone else has faced these types of issues before.... Thanks in advance!
    Last edited by ljbeyer; 01-31-2014 at 05:29 PM.

  10. #20
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    ((((((ljbeyer)))))) ~

    Welcome to BrainTalk!

    I'm so very sorry that your daughter has been diagnosed with epilepsy, ADHD, and ODD. I think it's reasonable to surmise that there is a correlation among these conditions, as they are all neurological disorders. What that connection is may be difficult to discern. Unfortunately, getting to the root cause of epilepsy is often impossible. But keep searching for the answer.

    That the Trileptal is working is a great blessing. May it continue to work for your daughter.

    Please join us on the Child Neurology forum, where you will find parents of children with a variety of neurological conditions, including epilepsy, who are happy to listen, support and share our experiences.

    http://www.braintalkcommunities.org/...hild-Neurology

    I hope those who have posted in this thread will return with an update.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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