General Question

[tommymommy]

Hello, I will do a formal intro post soon, but the reason I searched out this community is because my son has had another (I guess minor) seizure that was 4 minutes long.

His last two seizures were breakthrough seizures that occurred when he caught a cold. Both times tegretol levels were taken at the emergency room. Both times they were found to be mid range therapeutic.

His dr has opted to raise the dosage and I am to tell her if he seems too "sleepy" during the day.

Other family members think we should change his medicine back to phenobarbital, because he never had this problem before, he only seemed to have seizures (big ones) when he outgrew the dosage.

Here is the question: Are seizure controlling medications supposed to stop seizures 100% of the time? Should a cold be enough to let a seizure break through? It seems to me that the medication is working and that outside factors will always play a part in having more seizures. But I wonder if I am being stubborn by going along with his doctor. I will be seeking a 2nd opinion, but I was wondering about all of your experience? Is it supposed to prevent seizures 100%? If it doesn't does that mean its not working?

Thank you so much for any input!

 

[Nakamova]

Hi tommymommy --

Ideally, an anti-seizure medication should provide 100% seizure control with zero side effects. In reality, most meds fall short of that. Unfortunately, it can take a bit of trial and error to find the best medication and dosage for any given individual, and there's no guarantee that "best" = perfect.

I'm lucky enough to have 100% seizure control with my current med (Lamictal) -- so it can happen -- but there are side effects (of course). If those side effects were to become intolerable or problematic, then I would need to try something else.

If your son is basically doing okay on the Tegretol, then upping his dose slightly so that he has a larger "safety margin" may do the trick. If it doesn't, or if side effects become an issue, then you would want to consider changing meds -- either back to phenobarbitol or to something else in entirely. Phenobarbitol does have its negatives -- as a barbiturate it's not ideal for children, and/or for long-term use.

Best,
Nakamova

 

[donnajane]

Welcome tommymommy very interested in what you wrote. My 13month is not on meds at this stage as they are still trying to "work" out what is going on with his "seizures"/events. Last week he had a temp on Tuesday, not even for 24hours and only a low grade fever of 38, but his seizures and strange behaviour seemed to increase dramatically especially on the Thursday and Friday 48 hours after he had been unwell. We were not sure what to do as his Nureo has asked us to give him a weekly update which we did last Friday, usually he responds but we didn't get any response last week. Luckily this week our son is so much better still doing his "quirks/events" but none of the seziures which frightened us last week.
So I am also interested in if being unwell can increase seizures. Also I am unsure of exactly when we should seek help/ring Nureo/take him to the Emergency dept. His Nureo in the past has said if he has 3 bad days in a row but last Thursday, in particular and Friday where quite worrying to us. Can anyone give us a bit of a guideline. The ones we were concerned about he went limp, his eyes rolled bag and then seemed as if he was going to gag/choke. They were only short around 10sec but he did this 3 times in one day, that we saw. Usually he has ones where he vagues on, sometimes his arm/s and leg/s spasm when this happen.
Hope you get some answers soon.
donnajane

 

[JMusy]

Hi TommyMommy:
I think you will find if you read enough posts that no seizure medication is typically 100%effective in stopping seizures, although that is the preferred goal. A medication can work but the person can still have breakthrough seizures, just as our son has. Our neuro has clearly told us that any illness, fever, being tired, etc can contribute to breakthrough seizures. Hope that helps . Why was he switched to tegretol from phenobarb?