Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Single working mom, rural community, 2 kids with seizures!
Sun, 01/16/2005 - 17:17Topic: Family & Friends
I am 33 years old with a history of febrile seizures. My seizures began shortly after my first vaccination, and ceased at the age of 3. I have never had a seizure since. My 9yr old son currently suffers with serious absent seizures, combined with complex partial seizures. He has a couple hundred per day, on meds. He is currently taking Zarontin and Tegratol. His functionablility has improved, however EEG reveals the continued presence of seizure activity. He has breakthrough seizures, as well as "quirks" in his face (ie lip smacking, eye flutters, and frequent squinting). He as a toddler would have horrible temper tantrums, where he would cause himself physical harm. He still has scars where he used to bite himself. We have tried numerous drugs, still no seizure control. He still has a horrible temper, but with a lot of patience, rules, hugs and kisses, this aspect improves. Recently, my 16 yr old daughter crashed my car (as a result of a gran mal seizure, later to be determined). My 9r old son with epilepsy (Mike), was with her. Emergency personell witnessed another gran mal seizure, and she was to have two more before her two hour hell were to give her a break. I am apalled at the rumors that resulted from her accident. Several people accused her of faking everything (even by some emergency room hospital personnel). She was not herself again for at least a couple of days. They performed all kinds of bloodwork, urinalysis, and CT scan. She had no evidence of any head trauma, drug use, or abnormalities (other than mass confusion, fear, and rage, some common ictal complications). She then had an EEG 1 1/2 months later. Nothing! EEG is normal. Then this past Sunday, again she had her second epileptic episode. I witnessed it all. She had two tonic clonic seizures in 2 1/12 hours. For the first she experienced what I believe to be a four hour episode of "not being herself" possibly a partial simple seizure(s) followed by a typical tonic clonic episode. Terrifying! She was taken to emergency by abulance, and then released. We get home and she has another tonic clonic seizure 6 min long! She was not concious for 12 hours! Today is Thursday, she is still very tired and she stumbles. She had noticeable problems with the left side of her body, those have resolved. I think she was experiencing Todd's paralysis. She has an ECHO Cardiogram scheduled for this Monday! Any input is appreciated!
Comments
RE: RE: Single working mom, rural community, 2 kids with seizure
Submitted by Marti on Mon, 2005-01-03 - 14:26
My daughter is 1 and has had seizures since she was 7 mos old. I'm sorry I don't have anything to offer except that I hope this resolves for you all, and that you experience the best possible outcome for you and your family!-Marti
RE: Single working mom, rural community, 2 kids with seizures!
Submitted by pongosmommy on Sun, 2005-01-16 - 17:17
Hi,I understand how frustrating this can be for you and your daughter. I have been going through the same thing as your daughter for a very long time. I also suffer from Loss of Consciousness and left sided paralysis/paresis. And The Cat Scans, MRI's have all come back normal. Now we have been advised that since these were not done with contrast (dye) these tests need to be redone(by a new doctor). I have yet to get my EEG done. Although I have been having seizures since Sept/October. My prev Neurologist said I was just having a Migraine and refused to listen to any other suggestion. I tried to explain about what I was feeling and what was happening - and he said that was impossible- and I was just making that up.I had this same thing happen to me approx 8 years ago and was told that I was just faking it and looking for attention. I had fallen in my bathroom and had been knocked unconscious. I was Unable to feel my left side of my body for 3 days. The Neuro ran a needle down the length of me and nothing happened ... still didn't believe me. The next morning my feeling came back and I went home. I had severe headaches for a couple years. Diagnosed with Migraines. Imitrex to the rescue. Then I was fine until July 2003.Fell in the Living Room...Hit my head...knocked out...Left side out of commision again. This time I started having chest pain. They start thinking I am having a heart attack or a stroke. Went thru the Cardiologist tests. EKG, ECHO, STRESS , ANGIO the whole shebang, turns out I have the heart of a twenty year old. As for the Possibility of Stroke/TIA well that is where the Jury is still confused. Many episodes of mini strokes and "episodes of not being myself. The ER staff swore that 9/28/04 I was mid stroke and shot me full of blood clot breaker. Now that is some weird stuff, they were real concerned about causing bleeding in my brain. I don't know but it sure did give me a bruise on my arm- the whole arm was purple.We think this may have been my 1st grand mal that my family witnessed. I had 2 loc episodes that day. I was hospitalized 4 more times with stroke like symptoms in 1 month. My neuro still swore only a migraine. Finally freaked out on him and demanded to be seen at UCLA.They requested EEG and Other testes he said NO NEED. Have been seizing ever since. Now that it is after January 1st have changed medical groups to UCLA. My New MD has set me up with new Neurologist to get the tests redone.Last night I went to dinner/birthday party at restaurant with my husband and friends. I ended up in ER again. Three Grand mal seizures in less than 2 hours. Needless to say I don't feel too good today. ER Doc upped my Topamax to level it should be for seizure control. (we're doing it slowly over the next week- adding a few pills a day). Turns out my prev Neuro only had it to level for Migraine control.Now I am in my mid 40's and I am not looking for attention nor faking it. I made me very angry when these supposed professionals say things like that about patients. Like I can really make my eyes jump up/down/cross and roll all over the place in different directions if I wanted to.Nor can I make my pupils vibrate. Oh yeah Did I forget to mention that I have Focal Seizures?...I just learned that one last night. LOL.Well now that I talk/typed your ear/eyes off...what I wanted to say is don't let these tests get you down...you know what you see and you know your daughter. If We listened to the doctors in my rural hometown I would "just have a migraine". Keep at them until you are satisfied. I have had so many tests come back "normal" that it is frustrating. That is because they don't do the test when it is happening. Unless they catch the seizure. Best of luck to you and your kids,Dayna
RE: Single working mom, rural community, 2 kids with seizures!
Submitted by WashkuhnR on Fri, 2004-12-31 - 16:40
As far as your daughter is concerned, I would look into all other posibilites such as a mini-stroke or heart blockage or something that my cause the stop of brain activity. I sure wish you the best of luck because I live in a rural community and have epilepsy so I know where you stand