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Seeking anyone who matches my 5 yr. old's seizure activity - HELP!

Sun, 02/26/2006 - 11:52
I posted this on the Parent board also. Sorry for the repeat, just looking for answers. I am Mom to a 5 yr. old daughter - Bronwyn. Bronwyn is very bright and active. She is also headstrong, loud, self-serving, argumentative and manipulative. But everyone who meets her says she is a joy and very polite. And now, Bronwyn is epileptic. The seizures started Feb. 2nd and haven't stopped. That's right...haven't stopped. S he hasn't had a seizure free day yet. I read comments from other parents about a seizure a week or every month and I envy you. That would be heaven compared to this. On Bronwyn's first seizure day, she had 4 that I know of. She stiffened up on her right side and fell to the ground. She was at Kindergarten. The seizures lasted 5-10 seconds and I thought she was faking it all. Within four days I realized the seizures were real and took her to the pediatrician. The pediatrician didn't see evidence of seizures and sent us home to observe things for the rest of the week. I wasn't happy with that and took Bronwyn to Urgent Care the next day. The doctor there didn't see signs of seizure and sent us on our way with a phone number for Neurology, if I wanted to call them. By the end of the week, with the seizures up to 8 a day, I called the pediatrician and demanded an EEG. The EEG was on a Monday and Bronwyn did not leave the hospital for a week. They admitted her that day. She seized 3 times during the test and it identified sharp waves in the left temporal lobe. In the hospital, Bronwyn was given an IV anti-seizure med that caused an allergic reaction. The doctors put her on Trileptol. At this point Bronwyn went up to 23 seizures a day. They switched her to Topamax. When the seizures receded to about 10 a day, we were able to go home. We have been home for one week. Bronwyn continues to have 10+ seizures a day. She was diagnosed with Partial Focal, with the problem in the left temporal lobe. Her medication was increased to 30mgs in the morning and 30mgs at night with no change. Bronwyn's seizures, in my mind, are tonic. Her whole body stiffens and she falls. She is fully conscience and will even speak. There is some jerking towards the end but very slight. She has no post-ictal period, she immediately bounces back to what she was doing. They last about 45 seconds each. I cannot find one single definition of a seizure that is typical of hers. The pediatrician insists they are partial focal. And here is the strange part. She always, without fail, has a seizure when she has to urinate, which she only does once or twice a day. I called the pediatrician and demanded a blood test and urinalysis. Those were done on Friday, so maybe I will know something next week. Does anyone have a child with 10+ seizures a day? Does anyone connect urinating with seizures? Can anyone give me answers?

Comments

Re: Seeking anyone who matches my 5 yr. old's seizure activity -

Submitted by VanessaW on Sun, 2006-02-26 - 22:46
Hi there, I do not have any children, yet, we are trying but I wanted to express my deepest sympathy to you regarding your daughter's health issues. Bless her little heart. I had a seizure almost 5 years ago and every EEG I have had reports the same abnormal brain waves on the right temporal lobe. I take Phenobarbital every night. I do have 5 neices and nephews and I know it would absolutely break my heart for any of them to have to go through this, I would gladly go through it for them. I can't imagine how I will feel when I have a child of my own. I sincerely hope that your precious baby's seizure activity will be resolved soon. I am sorry I can't provide you with any solutions, I just wanted you to know that I will keep Bronwyn and all of you in my prayers. Here's hoping that you will get the answers you are looking for. God bless and good luck!! Best, Vanessa

Re: Re: Seeking anyone who matches my 5 yr. old's seizure activi

Submitted by PJ on Sun, 2006-02-26 - 23:02
Thank you for your kind words Vanessa! I'll find a solution if I can, or at least keep trying! I hope you are blessed with a little one of your own one day soon. PJ

Re: Re: Seeking anyone who matches my 5 yr. old's seizure activi

Submitted by PJ on Sun, 2006-02-26 - 23:06
Thank you for your kind words Vanessa! I'll find a solution if I can, or at least keep trying! I hope you are blessed with a little one of your own one day soon. PJ

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