Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. The condition is named from the Greek epileps...
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My 12 yr was dx in Aug 06. She was started on topamax right away. Did very well for 3 months, and had another gran mal in Nov. In Dec they did a video EEG which showed she was at high risk for seizures. They changed her medicine to depakote and weaned her off topamax. Her last dosage of topamax was on 1/14. She started having gran mal seizures once a day for 5 days. On her 5th day we started back on topamax. She also started having 3-4 bad absence seizures. For 2 months we went through the absence seizures and finally on 3/9 they started her on 250mg of zarontin twice daily. That seemed to work right away. On 3/16 she had a gran mal seizure. We found out that she had strep throat a few days later. They thought that this one on 3/16 was due to the virus. Well...on 3/27 she started having gran mal seizures. She had 2 with in an hour. We called the doctor on call and they upped her zarontin to 500 mg in the evening. The next day she had 2 more. I paged her doctor and she decided to give her diastat and up her zarontin to 500mg in the morning too. The diastat stopped the seizures for the day, but on Thursday she had 2 in the morning, and 2 in the evening. We gave her another dosage of the diastat so she could sleep. On Friday she had 2 more in the morning, so I called the doctor again. She decided to up her topamax to 125mg in morning and evening and start her on ativan. Friday night, she had another one. We gave her another dosage of diastat. On Saturday, she did well in the morning, but had a total of six. The weird thing is that these seizures weren't gran mal, but something in between a gran mal and an absence seizure. She wet herself each time. Her arms shock, and her eyes fluttered, and her legs were real stiff, and her face was real stiff. Sunday morning she did well, but she had 2 in the afternoon and 4 in the late evening. The 4 in the evening was while she was trying to go to sleep. We gave her another dosage of diastat last night to help her sleep. I called the doctor's office today, but haven't heard anything. She also had another light one this morning.
I am so lost what to do. She missed school Wed, Thur, and Fri. She is on spring break now, but my husband is off today. She can't do anything because we are scared to let her out of our sight. Any advice from anyone would be grateful. I hope to get something done soon. Update-4/3 The doctor has decided to up her topamax 25mg every 3 days until she is at 225mg 2x daily. I hope this will help. I have not heard how her day has gone, but we did let her go to the movies with her daycare. I guess no news is good news. Take care to all. Mindy Posted on 04/03/07, 04:04 pm |
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Well, unfortunatly I don't really have any advice, but I do understand what you are going through. The best I can tell you is to continue having such good communication with her docs. It sounds like they are concerned and trying to get things under control. Best wishes to you, I will keep your daughter in my prayers! 
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Hi
I have been on topamax for a few years now,, and the one thing that is common with this med is loss of appitate (sorry spelling is off today) It is a hard drug to adjust to and takes a few months once you get to full dose,,, but once you are there you seem to level out.. in the meantime,, small frequent meals.. and if you notice she is losing weight,, try to get her to drink ensure drinks.. weight loss is very common with topamax.. but again this will level out in time.. Good luck
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I am so sorry to hear you and your family are going through so much. I have been where you are but my son had temporal lobe seizures. No medication ever seemed to help David. I was beside myself with worry but something told me not to give up,even thougth he had been this was 14 years and the seizures were worsening. I took him to the dr one day and he had a bad seizure,running out of the drs office. The dr caught up with him about a block down the road and he fought us as we got back to the exam room. I felt so bad for him when he came out of the seizure and realized what had happened. I fought back tears. But I learned to never give up. I just knew God would give us the answer. Well,below is what happened.
http://www.mayoclinic.org/neurosur... David has been seizure free for 2 years now. He will have surgery for a new implant the end of this year. This is experimental and David and the others in the study are forging the way in hopes this can help them and others. David has,so far,had the best results. They have seen reduction of seizures in those with grand mal seizures. Not everyone has had good results. Have they tested to see if Shelbie can have the seizure activity in Shelbie's brain removed? They tried to do that with David,with mapping. It took about 3 days for them to pinpoint where the seizure activity was. But,the tissue could not safely be removed because it was in his speech center. David has gone to the Mayo cClinic from the onset of his seizures. They safely removed a benign brain tumor but could not get the seizure activity. Later,they tried again but mapping showed they could not remove the tissue. I will keep you and your daughter in my prayers.
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