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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)
Comments
RE: Please I need help again...
Submitted by angel_lts on Tue, 2005-03-29 - 09:40
RE: Please I need help again...
Submitted by batman on Tue, 2005-03-29 - 14:17
Karen,
Having epilepsy/seizure disorder, knowing someone with this or seeing someone having a seizure is very frightening. With the EEG tests, there is good and bad. Bad being that the person does have something abnormal, but the good part, is that the problem was found. This is one of the reasons what the EEG test is used for. Does the person have a problem? And if so, where on the heck is it located. There is something you definitely need to know about, and that is seizure first aid. HereÂ’s a website link for this. www.epilepsy.com/epilepsy/firstaid.html
I know all this is new to you, but you are no where near of being alone. Epilepsy has been around for over 3000, maybe even over 4000 years. But most of the best outcome and treatment for it has been within the past 15-20 years.
Ethan’s tiredness may have come from the post-ictal stage and/or the tegretol. AND/OR, the common side effects for tegretol, which are dizziness, sleepiness, unsteadiness, upset stomach, blurred or double vision, and headache. More details about tegretol start by the main web page at www.epilepsy.com/medications/b_tegretol_intro.html. More about what to do includes, ‘If you notice any of these problems, call the doctor. Sometimes the doctor can help by changing the amount or type of Tegretol prescribed.’
Fear is the number one problem for epilepsy, but communication will lower it more and more, even to a point where itÂ’s really not easily noticed or around to see. There is a starting web page called Family & Caregivers, which should be very helpful with so much information about life with epilepsy. It is located at www.epilepsy.com/info/family.html. I liked it so much that I took the time to copy and paste everything, then printed it out. It took me about a weekÂ’s worth amount of time to do this, but now I donÂ’t have to worry about always relying on my computer to work without errors and staying connected to the Internet.
I want to wish you the best for your entire family. If youÂ’ve got questions, weÂ’ve got answersÂ…if not, then weÂ’re going to go searching for them. Even if we need to play Easter Bunny.
Bruce CJ
Karen,
Having epilepsy/seizure disorder, knowing someone with this or seeing someone having a seizure is very frightening. With the EEG tests, there is good and bad. Bad being that the person does have something abnormal, but the good part, is that the problem was found. This is one of the reasons what the EEG test is used for. Does the person have a problem? And if so, where on the heck is it located. There is something you definitely need to know about, and that is seizure first aid. HereÂ’s a website link for this. www.epilepsy.com/epilepsy/firstaid.html
I know all this is new to you, but you are no where near of being alone. Epilepsy has been around for over 3000, maybe even over 4000 years. But most of the best outcome and treatment for it has been within the past 15-20 years.
Ethan’s tiredness may have come from the post-ictal stage and/or the tegretol. AND/OR, the common side effects for tegretol, which are dizziness, sleepiness, unsteadiness, upset stomach, blurred or double vision, and headache. More details about tegretol start by the main web page at www.epilepsy.com/medications/b_tegretol_intro.html. More about what to do includes, ‘If you notice any of these problems, call the doctor. Sometimes the doctor can help by changing the amount or type of Tegretol prescribed.’
Fear is the number one problem for epilepsy, but communication will lower it more and more, even to a point where itÂ’s really not easily noticed or around to see. There is a starting web page called Family & Caregivers, which should be very helpful with so much information about life with epilepsy. It is located at www.epilepsy.com/info/family.html. I liked it so much that I took the time to copy and paste everything, then printed it out. It took me about a weekÂ’s worth amount of time to do this, but now I donÂ’t have to worry about always relying on my computer to work without errors and staying connected to the Internet.
I want to wish you the best for your entire family. If youÂ’ve got questions, weÂ’ve got answersÂ…if not, then weÂ’re going to go searching for them. Even if we need to play Easter Bunny.
Bruce CJ
RE: Please I need help again...
Submitted by Hope19 on Mon, 2005-03-28 - 12:13
My heart goes out to you..I have Epilepsy I am 19 it came around about 4 years ago I guess.I dont know how you fell becasue thats your baby but I understand how he feels..Doctors can be rude and unconcered humans some dont even deserve to be called people or humans..But I just want you to know my prayers will be with you..Hopeif you want to you can email me mygirl4u2005@aol.com