GBS and Epilepsy

    • Anonymous
      September 6, 2008 at 3:43 pm

      Is there any relation between GBS and Epilepsy. My son Reinardt (5 at the time) contracted GBS and recovered with only a few minor residual problems. 19 months later after GBS onset we witnessed that he rotates his eyes when exposed to the sun. I took him for an EEG and to our relieve there was nothing abnormal. In three months time it got worse. He rotated his eyes more frequently and started to add a hand movement in front of his face when exposed to the sun. I decided to take him for a second opinion and contacted his neurologist who treated Reinardt during his admission to hospital with GBS. Dr Lippert wanted to see Reinardt asap. The following day they did another EEG (light test included) and during the tests they discovered that he has Photosensitive Epilepsy. He had two seizures (lasting 2 seconds each). According to his doctor it’s got nothing to do with GBS. Anybody experienced the same?
      From Jane (Reinardt’s mom in South Africa)

    • Anonymous
      September 7, 2008 at 5:11 am

      Hmmm! This is sad and I hope your son gets better soon. I have not had any pronlems like this but others in here might know the answers. Welcome to the site and I do hope your son get’s better soon! Cyber Hugs

    • Anonymous
      September 7, 2008 at 6:01 pm

      Hi Jane
      I had major problems with light right after I was diagnosed with GBS but it has gotten better. I was not diagnosed with any kind of epilepsy but is questionable about seizures as I was falling asleep at night. Good luck and take care.

    • Anonymous
      October 20, 2008 at 3:39 pm

      I can’t believe I am reading this post! I just posted a question on one of the other threads, wondering if anyone has had seizures since having GBS. My daughter was 3 when dx with GBS, and in the hospital was the first time I noticed a seizure (we didn’t know what it was until later). It is called a partial motor seizure and now that you mention it, she was very sensitive to light during sickness. I have wondered, now that she apparently has epilepsy, should I keep her from blinking lights or bright lights? Is it likely light-induced? Please, if anyone has any thoughts or info on this, tell me as Hillary is only just 5 and still I have to guess at a lot of what is going on inside of her. I feel like it is a full time job just to keep on top of all of this. Thanks!!

    • Anonymous
      October 20, 2008 at 3:41 pm

      Stormy, what do you experience at night when falling asleep that you think might be a siezure?

    • Anonymous
      October 22, 2008 at 3:09 pm

      Reinardt was also very sensitive to light while recovering from GBS. It is questionable whether GBS and epilepsy are somehow related, although during GBS the brain doesn’t get affected, but could it be that it did had an effect after all? Maybe a GBS specialist will be able to shed some light on this subject. Reinardt has been taking his Epilim medication twice a day, and Monday he told me that his body is starting to shake (epileptic seizure). I now have to keep a diary for a week and then submit it to the Neurologist. Exactly 2 years ago GBS came into our lives with a huge bang. Reinardt was such a big fighter and overcame the syndrome, and now this. Shame, I feel so sorry for him. He is my baby (7 years of age), and sometimes it’s difficult to explain to him that he’ll be ok and he must stay strong. Then he asks me: Mommy why do I get sick all the time? Any parent who went through a GBS ordeal knows how awful it is to try and be positive for your child’s sake, but meantime your hart is breaking into 1000 pieces….

    • Anonymous
      October 23, 2008 at 12:40 am

      Guess I should have explained myself more. When I would first start drifting off to sleep I would start throwing up. Of course this would wake me up and I would be sick and then lay back down and it would happen again. This went on every night for a year. the doctor said it had nothing to do with GBS but of course I know different. (I didn’t do it before). Anyway, one speculation is that the muscles in my esophagus were extremely weak and when i would start falling asleep everything would relax to the point where it would allow stomach contents to come up. the other theory was a type of seizure that showed itself by throwing up. No one ever decided why it was happening but after a year it just quit. It doesn’t happen anymore and boy am i glad because I was not sleeping at all.

    • Anonymous
      October 29, 2008 at 2:51 pm

      Hi all,

      this may sound totally out of the blue, but I am trying a gluten/casein-free diet for all of my family, as my daughter developed seizures after GBS. As I have been researching GBS in relation to epilepsy, I have come up with a huge body of evidence that autoimmune disease is often related to gluten and casein (cow’s milk) and also to epilepsy. I made a chart of our family health history, things that people just think they have to live with like Raynaud’s, epilepsy, migraine, food allergies, colitis, excema, acne, etc. I always thought there was an answer to the migraines and acne I have–they started in college and now I think I know why–I had a severe gluten intolerance as a child and there is a ton of that stuff in cafeteria food. I also started drinking milk again in college. Needless to say, I have found (by googling) that all the above listed symptoms are caused by a non-celiac gluten allergy. So, you may not have digestive problems but you have GBS, seizures, raynaud’s, etc. instead. I am going for it and if it helps I will post it on every thread. I can’t stand that my kid was so sick and that she now has seizures and who knows what later! I will research until I have reasonable cause to stop (i.e. a healthy kid and husband). I also read that seizures are the brain’s way of detoxing. If this is true, then it would make sense due to all the meds you have to take with GBS. Of course, the docs don’t put any of these things together. I don’t even ask them anything anymore. My daughter had none of this before GBS. Hope this helps or at least gets the ball rolling to look into this more. Please post your thoughts . . .

    • Anonymous
      November 4, 2008 at 2:43 pm

      This is an interesting discussion. Thank you for the info dealing with the gluten and casien. My son was diagnosed with GBS Sept. 07 at 17 months old. He only had a hand full of episodes where I would connect to seizure like symptoms both in the hospital and a little once we were home. I connected them somewhat to the Neurotin (sp) he was taking for pain because they seemed to come shortly after taking the medication. Needless to say I didn’t fill the perscription once we got home! He hasn’t had any seizure like symptoms for months now but thank you again for the info dealing with the diet. Anything to keep things moving forward! I think I’ll try and research a little more on pain meds and their side affects.