Katie
Dear Susan: We know what you are going through, as our 5 year old daughter Katie is also taking tegretol for her seizures. It was less than a year ago that we learned of Katie's disorder and we've been doing okay; however the seizures still pay us a visit every so often. Fortunately, the tegretol seems to at least lessen the length of the actual seizure, but the tegretol is a rugged drug to handle at the same time. Katie has been just increased in dosage (600mg per day)and we haven't seen a seizure for 2 months time. Of course, we also feel like we're on pins and needles at this point as she shows a pattern of a seizures every 7/8 weeks or so- but we've been lucky thus far. Katie takes the time release form of tegretol (cabratol)to help lessen the "spiking effect" that she has experienced in the past. It's still too early to tell if it's really helping her and we just take one day at a time. We can sympathize with what you are having to go through with your little one- we're in the same boat. Because our Katie is on the verge of attending kindergarten we have been dealing with the side effect of hyperactivity with taking the drug. Are you? She has also become quite emotional and fretful over the littlest things too. We recently had the unpleaseantness of having to withdraw Katie from her school setting/ daycare due to aggressiveness and it has been very hard on all of us. Unfortunately, the school was not willing to deal with Katie and her newly found disorder and they made it very difficult for us to maintain a relationship with them. We look at it as discrimination, but we don't have the time to be petty in Katie's situation, we just need to get her ready for the fall and get her behavior in order by the time kindergarten begins. It's been very hard believe us. I never thought that we would be turned away from a school as it was supposed to have been such a reputable Charter School, but since the newly found disorder while we were attending the school over the past yar the schol has labeled KAtie and they don't want to deal with her and or us. So now we're left with a sour taste in our mouths. Life goes on and we're here for our daughter and her special needs whatever they might be. Fell free to e-mail my wife, Nancy and I, Rob at anytime if you want to talk about our own kids. It's always helpful to talk. We hope to hear from you and or anyone that comes across this message board, so we can talk. Take care and God Bless us all.