My First post

[jennamom]

Hi everyone. My name is Jennifer and my 8 year old son was recently diagnosed with atypical absence seizures and partial seizures...still trying to determine more. My perfect child started zoning out last summer. I don't know how many times I chastised him for not paying attention. Then his counselor saw one in a session and told me it was a petit mal seizure and to ask his pediatrician. In Sep., for the first time, he was struggling in school. By Oct I thought he had a learning disability. Then a teacher saw him have one and called me. So he had an EEG in Oct that showed abnormalities. Neurologist apt Thanksgiving week and medicine started Thanksgiving Day. Seizures became multiple times a day. Then every hour. Depakote has been increased from 2 a day to 5 a day (he's only about 50 pounds-tiny). During Christmas break I saw how they've increased and how many he's actually having. He was missing so much instruction in school while he was "frozen" and started peeing once a day during a seizure. For these reasons, I pulled him out of school on a medical leave.

Now he has seizures every 10 or 15 minutes all day long. During at least one of them per hour, he pees. So now he wears pull-up/overnites around the clock. He goes through 8 to 12 pull-ups a day which is super expensive, but necessary. He is sort of different since the Depakote. Can't focus, can't stay on task, super hyper and loud. Going from having a 3 yr old at home to BOTH of them at home (and a kindergardener at school) is like having 2 toddlers. I'm so upset and scared. This scariest seizures are where he walks down the steps or into the room, or TOWARDS THE WOODSTOVE and he's not actually aware/conscious/there. I can't let him ride his bike, new scooter, sled, 12 volt 4 wheeler, climb, swing...nothing. I feel so sad about that part. But I feel so much more control now that he's home; close to me. Depakote's not working. 24 hour EEG tomorrow. I wish I could turn the clock back to a year ago.

 

[N Sperlo]

Hi Jennifer.

Some of this sounds familiar to me. In high school my grades plummeted before I saw a counselor who diagnosed me with learning disabilities and also saw me have a seizure in a very similar way you son's counselor saw him. It was certainly life changing not only for me, but for my mother. She thought I was on drugs before she found out.

I started on Depakote, but it was terrible. I was sleeping 16 hours a day and eating when I wasn't sleeping. I still think my teachers only passed me because they had an idea of what was going on.

To this day, my mother has a picture of me sleeping on a hardwood floor on Thanksgiving. She has it in her office to remind her of how bad it was one day, and how much better things are today.

I'm controlled now. We just need that correct concoction of medicine. The 24 EEG is what got me started in the right direction and I hope it will get your son started in the right direction for him.

Welcome to CWE.

 

[Belinda5000]

Hi Jennifer,
I went all through school having sz's, and I remember having absence seizures in elementary school. I still zone out sometimes.I remember the trouble that I started having in school started in 7th grade.I lost control of my bladder when I had seizures at night when I was a little younger than him.

You can't keep him from doing everything. He'll end up resenting you if you don't give him some freedom.I'm talking from experience.I busted my chin open 2 times as a kid.
IF you see him walking toward the stove during a seizure direct him away from it.

Since the Depakote not working tell his doctor about it.There are a lot of different combos of meds if one doesn't work for him.

 

[Janus]

Welcome, you are in the right place. All sorts of people on here will know lots about the experience you son goes through and help for you is here too. I hope you get the info you need soon.

 

[Nakamova]

Hi jennifer --

It sounds like the the Depakote isn't helping, and may be making things worse. I recommend that you ask the pediatric neurologist to re-evaluate your son's meds, and consider trying a different one. If necessary, seek out a second opinion.

Best,
Nakamova

 

[Crash]

Yes you are more than welcome here.There are are plenty off old threads and perhaps some newer ones that will help you with your particular problems that you are going through with your son.Wishing you all the best.

 

[jennamom]

We finished our 24 hr ambulatory eeg on Friday. We were able to record multiple seizures per hour and "pee seizures", hitting 11 wet pullups Thursday. Many absence seizure and 2 "walking seizures". I'm noticing he can be "startled" into a seizure. Weird. Wondering how this appointment on Tuesday will go since Dr. should have the results of the EEG.

I've previously noted his changed behavior to Dr. since being on Depakote/divalproex sod sprinkles. Trouble concentrating, staying on task. Coordinating thoughts to write sentences/paragraph for schoolwork is like pulling teeth. He's so hyper now also. Higher dose of meds, more pee seizures. But he goes to the bathroom throughout the day just fine. And it isn't ALL seizures in which the incontinence happens; just 1 per hour. Maybe I'm focusing on the annoying side effects? But how long would a person continue on one particular medication before saying "this isn't working"? It's been 10 weeks. Does anyone with these absence seizures or partial seizures have a sibling with it also? My Anthony has 2 younger brothers.

 

[chmmr]

Hi Jennamom, does the neuro think he is having absences too? I only ask because sometimes, especially with kids absences and complex partials can be very hard to distinguish, but the EEG would tell the neuro for sure (absences are a generalized seizure whereas complex partials are focal seizures (in one area of the brain). I hope your neuro has some good answers for you tomorrow, as far as how long to give a med, it's really hard to say but in your sons case it seems the meds may be making the seizures worse instead of better (although it could be they are just not helping at all and he would have progressed that way anyways). I would go with your gut, if you feel strongly you haven't seen any improvement and he has just gotten worse, tell the neuro you need to change them now and not in another month or two.
My daughter is 4 and has complex partials, and we suspect now some simple partials as well, but before she started meds in September she was having pee accidents many times a week that the pediatrician thought were "normal age appropriate regression". Then we started meds because she had a cluster of seizures and it just stopped. Now and then when she has a bad day and has a seizure, we do see the rare pee accident but they are very rare (once every couple of months, and like you say not with every seizure).
For what it's worth, my daughter has 3 brothers (1 twin, and 2 older), and none of them have any kind of seizure disorder other than her twin had 1 febrile convulsion with an extremely high fever almost 2 years ago. Please let us know what your neuro says on tuesday. Good Luck!!