I am a mother of three, two girls(7 and 3) and one boy(3). About 6 months ago, my son Isaiah had his first seizure. Without diagnosing the reason, he was put on phenobarbital. Since then, his medicine has been switched several times, and it's like they have taken my son away from me. He is so out of it all the time, and at any moment, his body will jerk and he will fall. He is constantly hurting himself, falling on things, or from things. It is so heartbreaking to watch him stare off into space and seem so far away; I often have to tickle him to bring him back. Some days he has up to 10 grand mal seizures a day, and sometimes he will go several days, sometimes a week without one. His first MRI and EEG were normal, but recently, we had another EEG at another hospital that was very abnormal. No one can tell us why our son is having these seizures. He is scheduled for another MRI soon. Will this possibly give us any answers? How do I deal with watching my son's quality of life diminish? I want to make it go away, and I can't.
Any chance of getting to a pediatric epilepsy center??? Sounds like you guys all need some clear answers to what's going on, and some meds that are less likely to zonk him, and control the seizures better.
Thank you first of all for taking the time to reply. My son actually has an appointment at Cincinnatti Children's Hospital tomorrow. He is scheduled for an MRI next month, but after the day, last week, that he had 10 seizured in one day, we have been pushing them to get him in sooner. Hopefully they will be able to do it tomorrow. When you say pediatric epilepsy center, are you referring to a children's hospital like this one? I am so new to all this, and I so want the best for my son. I want answers most of all. And yes, he does need medicine that won't make him so "druggie." It's like he's not the same Isaiah anymore. Thanks again.
I'm not an expert, but it also sounds like other medical conditions should be considered. children with autism experience seizures and starting out into space.
I'm so sorry that you all are having to deal with this - it's so heartbreaking to watch what the meds do to our kids. My son started having seizures about 2 years ago - he'll be 14 in August - and we still haven't found a medication that will totally stop them.
In the meantime, though, I've spent most of my free time on the Internet searching for possible causes since our children's neurologist won't consider anything but straight epilepsy as the cause.
A lot of people gain wonderful control of their kids' seizures after putting them on the "Ketogenic Diet" which is a mostly fat and protein diet. Most doctors recommend doing it in conjunction with a hospital dietician that specializes in this. Do some checking and see how high the percentages are for children that are helped on this way of eating. We find that our son does much better when we eat like this, though not as strict, more like the Atkins diet plan. There was a movie made about this with Susan Sarandon, can't remember the title, but they had to search and search for the cause when the doctors wouldn't help them.
Another thing we researched is Celiac Disease, (or Gluten Intolerance), especially if your son is very gassy; has loose, smelly bowel movements;allergy symptoms; has constipation and/or diarrhea; and has lots of stomach pains. (There are lots of other symptoms and everyone seems to have very different problems. We didn't pursue it for a long time because we thought you had to lose weight and be very skinny with Celiac, but NO - you can gain weight, too!). Lots of kids with this problem have seizures along with the other symptoms and the seizures stop when they are taken off of grains - wheat, barley, rye, and oats. We even had Brent tested for this and although he didn't have full blown Celiac Disease, we found he had one identical gluten intolerance gene from my husband and myself and that put him at risk for the celiac symptoms and seizures.
Just wanted to mention at least a couple of things I've found that could be a cause your neurologist might not pursue.
It's not an easy road... a friend at work (whose son had seizures till he turned 20 last year), told me to take it one day at a time and just be glad that you have him in your life even if he's a different little boy than you had before he started the meds. They are such special, brave kids!
Take Care,
Elaine
Last edited by brent's mom; 07-20-2006 at 02:00 PM.
Just wondering has any of the doctors that you and your son
has seen ever questioned you about your son ever having
a high fever,ear infection,or severe fall or hit to his head?
I too was fine at birth,then at age 18 months I had a very high
fever and ear infection when I just started to have a bad convulsion.
The doctor then also questioned the penicilin I was put on for the
ear infection.I am talking about 42 years ago,so much has advanced since
then,and I know that we all are different,just thought I would give you
a few suggestions since the doctor has seemed to come up with anything
for you yet.As far as the stares into space,that sounds like it would be
either petite mal or complex partial,does your son pick at his clothes or
self while having these seizures?If so,then that would be a partial seizure.
I know I am not a doctor,just thought I would make a few suggestions
you could discuss with the doctor since they don't seem to be sending
any helpful info. your way.They do have pediatric neurologist,maybe someone
at the childrens hospital could recommend one for you.Good luck.
I am a mother of three, two girls(7 and 3) and one boy(3). About 6 months ago, my son Isaiah had his first seizure. Without diagnosing the reason, he was put on phenobarbital. Since then, his medicine has been switched several times, and it's like they have taken my son away from me. He is so out of it all the time, and at any moment, his body will jerk and he will fall. He is constantly hurting himself, falling on things, or from things. It is so heartbreaking to watch him stare off into space and seem so far away; I often have to tickle him to bring him back. Some days he has up to 10 grand mal seizures a day, and sometimes he will go several days, sometimes a week without one. His first MRI and EEG were normal, but recently, we had another EEG at another hospital that was very abnormal. No one can tell us why our son is having these seizures. He is scheduled for another MRI soon. Will this possibly give us any answers? How do I deal with watching my son's quality of life diminish? I want to make it go away, and I can't.
Hi, I am a mother of 3 as well, 2 girls (15 and 11) and one boy (7). My son was diagnosed with petite mall seizures 2 years ago. We always thought he was tired because he never slept through the night. As he got older the staring into space got worse and his eyes looked different and his head would bob up and down. By the time he started school he would fall over, he was always getting hurt. I know how you feel...I cry myself to slept quite often. He has been on 9 different medications, some better than others. We have stuggled with different side effects from zombie to completely off the wall, rash, and vomiting. Today he is on 3 different medications 3 times a day. We are running out of medications to try and are very scared. Underneath it all my son is a very sweet little boy...I know what you mean when you say that you want to make it go away and you can't. He has had 3 EEG's and 2 MRI's and all they could tell us is that they come from the frontal lobe. It's time for a second opinion, I should have done it along time ago!
What is wrong with my son? 
