48 hours veeg shows he has a rare kind of epilepsy

[happycc]

He has multifocal epilepsy. Interictal epileptiform discharges originating in 3 or more points on both sides of the brain that can secondary generalized grand mal seizures. My son has at least 12 different points. See attached. I matched the points mentioned in his medical report to this form. Genetics testing pending for seizure disorders to find a possible syndrome. Neurologist said basically as a result there are only two meds (Onfi and Depakota) he can try after this current one he is on. He is on Lamictal as we had to take him off zonergran and neurologist doesn't want him on topamax either (similar to zonergran). If after these other meds, he can get the VNS implant. RNS implant when he turns 18 years old. Even with the implants, medications are still needed. He also has limited with sleep 3 and 4  level sleep. Like no REM sleep. So he is going into a sleep study with more eeg soon. Her goal is not to suppress the interictal epileptiform discharges and she is comfortable with one eye deviation a week as long it is no longer than 5 mins. 

 

 

[Drama Llama]

I'm sorry I missed this. 

I'm sorry you didn't get more straightforward, easier to fix results, but I think that looks like a pretty clear pattern connecting the weaknesses you're seeing with seizures which makes me hopeful that something will help.  In my experience when seizure meds finally work with kids with seizure activity that's impacting development, the results can be really dramatic.  So, I'm hoping you have that experience as well.  

Thinking of you!

-- BaseballandHockey

 

[happycc]

1 hour ago, BaseballandHockey said:

I'm sorry I missed this. 

I'm sorry you didn't get more straightforward, easier to fix results, but I think that looks like a pretty clear pattern connecting the weaknesses you're seeing with seizures which makes me hopeful that something will help.  In my experience when seizure meds finally work with kids with seizure activity that's impacting development, the results can be really dramatic.  So, I'm hoping you have that experience as well.  

Thinking of you!

-- BaseballandHockey

 

Yes I am hoping we can get the seizures under control which I think they are. The doctor however says she cannot suppress the interictal epileptiform discharges in son's case so his issues will continue. Day before Thanksgiving he had a full 45 min rage attack and we nearly had to call 911 and use his diastat. He is on lamictal and straterra will be added as well. 

[Drama Llama]

Just now, happycc said:

Yes I am hoping we can get the seizures under control which I think they are. The doctor however says she cannot suppress the interictal epileptiform discharges in son's case so his issues will continue. Day before Thanksgiving he had a full 45 min rage attack and we nearly had to call 911 and use his diastat. He is on lamictal and straterra will be added as well. 

I'm so sorry.  That sounds rough.  Have you used the diastat before?  

[happycc]

3 minutes ago, BaseballandHockey said:

I'm so sorry.  That sounds rough.  Have you used the diastat before?  

To be honest I should have many times. But how on earth do you shove a diastat up someone's rectum while they are seizing? You have to hold them down and wrench things apart. Seems so violating. 

 

[Drama Llama]

15 minutes ago, happycc said:

To be honest I should have many times. But how on earth do you shove a diastat up someone's rectum while they are seizing? You have to hold them down and wrench things apart. Seems so violating. 

 

The only kids I've carried diastat for had grand mal status seizures, where the kid isn't conscious, and anoxia is an issue.  So, feels a little less violating since they aren't going to remember, and obviously justified.  I've also done other really invasive procedures on my own kid, but he was fully conscious and able to understand why.  You're in that gray area between where what's happening is dangerous but probably not immediately life threatening, and he's conscious but not rational.  My guess is that's the hardest place to make that call.  When I've been in that situation at school we cleared the room, and then waited it out. 

Given that diastat is valium, I wonder if there's another formulation you could use.  Any chance you could get him to eat or drink something when he's in that place?  I have no experience.  My kid had a g-tube so that question of when oral meds are safe (vs an aspiration hazard) was not one I ever faced.