Hello again,
My 9 yr old son is taking 1600mg total a day to stop the seizures. He is taking 1500mg of Keppra and 100mg of Topamax. He takes his meds twice a day.
Since December, we've noticed that he seems to have spells when he gets overheated. I told the Neurologist at an April appt. and was told that the Topamax can stop you from sweating so the Neurologist increased the Keppra dose. My son used to step outside and sweat so much that it looked like someone had dumped a bucket of water on him. Not anymore. He gets red faced and smells and tastes (when kissed) salty, but can't sweat. And he has a temperature of 100 or more. We watch him to make sure he doesn't get overheated too much to have a spell. And also try to cool him off too.
He had a bad episode in June that had us in the Emergency Room. Our Neurologist's partner increased the Keppra more. I again told her what I'd told my son's Neurologist about the Topamax side effect and she said that I was to wait until my Oct. appt. and then we could possibly wean him off the Topamax.
I'm frustrated that it seems like the meds are causing the seizures and I feel like I'm not being taken seriously. We've been told that this is a low dose and it can be raised even higher. I went to the April appt. alone and have told my husband that he has to go with us in Oct. I also have a letter from the school nurse about my son overheating at school. I'm hoping that this will get the Neurologist to take me seriously.
I just want to say that if it doesn't feel right to you, it probably isn't. Go with your gut. You know your child more than the doctors do. And watch for signs that don't seem right. My son has been on meds that have made him anxious, moody, loss of appetite, big big apetite, and even caused him to bruise easily. (Which the school decided had to be from abuse, but that's another story). He is a very active boy. He loves to rollerblade and ride his bike.
My son has been having seizures since he was almost 4yr old. The seizures seem to be changing as he gets older and with the different meds that he is on.
Thanks for listening!
I had epilepsy due to stress for about 3 years. Since 2001 i have been fit free. Mine is heredity as well which i never knew about till 1998/1999. I get it from my mothers side of the family and my two children have the chance to get it but im hoping that they dont. My fits would last about 2 hours. I would feel funny and have my hearing go funny on me then next thing i knew it would be a couple of hours later and i would be sore. I had grand mal seizures. I have not had any since 2001 and have been able to go off my meds.
we pray every day that he will outgrow this someday, but the way it is progressing, I have very strong doubts. His Pediatrician is now talking about sending him to a specialist in Denver Colorado to maybe have Brain surgery......We will do whatever it takes to help him. Thanks again
