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….