Status Epilepticus

[Emeric's_mom]

I have a question about this... I'm still learning so this is probably a stupid question...

How exactly do you know if your child is in status epilepticus with the type of seizures that Emeric has? Our neuro never said what type of seizure he's having other than generalized, but more specifically I would say they're atonic seizures. Just a brief flutter of the eye, a slight drop of the head, etc...

Well, this morning in less than 10 minutes I've noticed 7. They're almost one after another. He has done this before but only once that I can remember. If they continue this close all day I'll call but right now I'm just wondering how you classify status epilepticus?

[mpalmer118]

When Rachel was dx w/ epilepsy (she doesn't have it, long story ) we were told that any single seizure lasting 10 minutes or more should be considered an emergency.

With clusters like what Emeric is having, I am not sure what the recommendation is, I would definately call the neuro's office if they continue to cluster.

[Mom2Ava]

Ava has had several episodes of complex partial status.
We have a written protocol for Ava.
A protocol I think is so important for any child that is prone to clusters & status.

I have learned the sooner you treat status or clusters ... the more effective the treatment is and the easier it is to stop those darn seizures.

[langansmom]

There are no stupid questions when it comes to seizures. Heck, even the trained professionals are stumped with this stuff....

You should definitely talk to your neuro about a protocol on this. My memory is that with clusters, the definition of a status event is a series of seizures that lasts more than ten minutes where there is no recovery between them. That said, I know many neuros will tell you to give a klonopin wafer or diastat if you are seeing an unusual cluster of seizures, to break them up and give the brain a chance to rest. Do you have a diastat prescription? It is emergency medicine to stop status. I highly recommend that you get your neuro to prescribe it. We keep it everywhere. When it was first prescribed, we had no thought of ever needing it. But we were sure glad to have it when Langan had her first status event. It's good insurance to keep it around, in my opinion, and hope you never need it.

(((hugs)))

[Jenelle's Mommy]

The first two times my daughter has gone into status, it sorta creeped up on us - mainly because we were still on the learning curve and couldn't catch it in time. Don't worry - no question is stupid. Dealing with seizures is like trial by fire, unfortunately! You have a grace period, so don't sweat it!

You need to watch for cluster seizures. What this means is seizures coming one after another, and not necessarily lasting over 4 minutes, etc. Not sure if you are using Diastat (more on that later) but our rule of thumb on when to "intervene" with our daughter's seizures is timing - a seizure over 4 minutes means to give her Diastat (if you don't have that, I'd recommend calling 911. As for clusters, if she has many seizures in a 10 minute time frame that add up to over 5 minutes, we give Diastat. That could be four- 30 second seizures, then a two minute seizure all within 10 minute time frame. In a 20 minute time frame, all the seizures add up to 10 minutes, etc.

If you child is not actively seizing over 4 to 5 minutes (sometimes sooner the younger the child), but you see the seizures continue to come one after another, you shoud go to the ER or call 911. We live relatively close to our ER (within 10 minuntes) so I would opt to drive myself.

Signs of status: If your child is extra sleepy or very lethargic, or just doesn't seem to "recover" (i.e. seem aware of their surroundings) from the onset of many seizures during a time frame, that could be status. The first time Jenelle was in status, she slept the entire day - 23 of 24 hours it seemed. This was difficult to detect because we weren't actually seeing any seizures as she was sleeping. I remember telling our Neuro "I have to literally wake her to eat and she doesn't seem interested" and then he suggested an EEG. They hooked her up and she was in status (constant seizure) so we were immediately admitted.

The second time she went into status, she just kept having seizure after seizure, each time longer than the one before. We caught that one quickly. The third was when she was already very ill with meningitis. Again that time, she just wouldn't wake up.

As for Diastat - this is a medication inserted rectally. It's rectal valium, and it will stop a seizure. It used to be that Diastat was only prescribed for patients who were prone to long seizures, but now they are giving it to more patients like my daughter who can have an onset of "cluster" seizures that lead to status. If you don't have a prescription for this, ask your doctor about it.

I hope that helps! Like I said, there is a learning curve, so don't beat yourself up over this stuff. A lot of it is to learn as you go!

Hang in there!

[Jenelle's Mommy]

Originally Posted by Emeric's_mom

Well, this morning in less than 10 minutes I've noticed 7. They're almost one after another. He has done this before but only once that I can remember. If they continue this close all day I'll call but right now I'm just wondering how you classify status epilepticus?

Since you have just discovered his seizures, you might want to run this by your Neuro. Call them and tell them what you've seen in a certain time frame (i.e. 7 seizures lasting 15 seconds in a 10 minutes time frame, etc.) It seems with clusters, each child is different, as to when things get serious and when its OK to just monitor them. In this case, you may just need to increase his meds (Dilantin, right?)

I realize this being a holiday week, your Neuro is probably not available. Definitely watch this - keep a log. I would call or make a trip to the ER if they continue over 2 hours, and the majority of that time has been seizing. Usually, the ER make seizures a priority - especially with infants. You shouldn't have to wait.

[spitball]

Hi- I agree, there are no stupid questions. Unless we ask, we don't know. I do not have children, but had epilepsy (knock on wood), and now I feel the need to tell you something: Any parent(s) who posts on this board deserves a great deal of credit. You are trying anything for your child. You are wonderful parent(s) and should give yourselves a great deal of credit. My Mom handled the epilepsy better than my Dad or Sister. Everyone handles things differently. You could be in denial-but you are strong and a great role model.