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Please I need help again...
Tue, 03/29/2005 - 14:33I came here a few months ago bc my son had had a grand mal seizure back in December and then got some abnormal EEG and suspicious "seizure like" behavior in January...he is 4, has many GI issues (tube fed due to dysmotility) and we were waiting for his referral to a ped neuro on Apr 28, he was not put on any seizure med...
I am not sure if that reminds at all of us but...we ended up in the ER again last night (he had had another seizure tha night before but we chose not to go to the hospital bc after all was siad and done he seemed ok and was going to call the ped first thing Monday AM). He had another seizure last night and I swear it was the worst i have ever experienced...last night I was truly afraid for him...it wasn't any longer than the night before but this time the "severity" was so much worse...as DH called thwe ambulance and knelt beside him and begged him to breathe, I watched him go blue and then grey...i was terrified....fire and ambulance were sent with their sirens just blaring (I am sure we woke all the neighbours)...finally just as i heard the sirens coming he relaxed and took a breath and he went pink again....firemen and then ambulance people all piled into his room, they were quite worried initially because he made no reaction to their prods (check his pulse, flicked and pinched him)..finally he made some movement...oxygen and monitors attached he piled in the ambulance (pjs on too!!)...finally at 7:30 we were released home...Ethan is on an anti-convulsant (Tegretol) and we are to f/u with the ped torrow and I am sure he will push to up the neuro appt. He has so happy to see that the Easter Bunny had come when we got home but he was still very tired and wobbly on his feet....he is asleep now and I had about a 2 hour nap.
I would appreciate anything in the way of information and thought you can give me...i feel so lost right now and now sure what to do with myself and my fears for him. I know that things could be worse but for me right now this is the worst. Any thoughts on Tegretol...he was very tired still and unsteady when he came home, is that more a post seizure reaction or is it the med...i think they gave him 100mg twice a day...please thank you for anything you can share ...i appreciate your knowledge and help....
Karen
mom to Kiana 10 (absence epilepsy on Epival), identical twins Nicholas and Alexander 9 and Ethan (my boy my hero...too much going on to list but the toughest kid around)
RE: Please I need help again...
Submitted by Cedar on Tue, 2005-03-29 - 14:33
Kaaye, In reading your post I felt for what you are going through let alone what your son is going thru. It also took me back 36 years to when my parents saw me have my first seizures and the panic and fear they went thru. I hope that you all are able to get some much needed rest. As someone with seizures and having not recieved alot of comfort when I was a kid I would encourage you to one, just be with yourfeelings, with your son in a comforting way as I get the sense you are. Seizures are very hard to watch and can be very frieghtening to all who witness them. The fact he appeared to not breathing had to be very scary, a good idea to share this with your neurologist, which I hope you have agood one. Your son needs much rest and comfort, this I can not emphasize more. It takes a big toll on us emotionally and physically. If possible see if there is a support group for parents of Epileptics it might help you not feel alone in the difficult times. You are doing the rightthing to post here and there is alot of support on here and other sites for all affected by epilepsy including the families. My thoughts are with you and your Son. Take good care and keep us posted.