Possible clusters in my child? Please help.

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Hi everyone. My daughter has spent the last few days in the hospital due to her seizures. This is very new to me, and I'm hoping someone here can help me understand what I should do. Sorry this will be a little long. Please do read :)

We did an EEG and MRI and the EEG showed positive generalized seizure activity, and also some evidence that the baseline wasn't normal. The MRI was negative for anything of note.

Here is a description of her seizures from my point of view:

PHASE 1: They start with questionable or light seizure activity. We see evidence of seizure activity, but it may be quick, take a keen eye to spot, and is interlaced with non-seizure behavior and seemingly normal mental capacity. The questionable seizure activity can be seen as uncoordinated movements, short wobbles in balance, or brief staring spells. This stage really takes some getting used to her and her behavior to even be able to spot it. This may last upwards of 5 minutes, and it is really hard to tell when exactly they may begin, since you may not spot them all.

PHASE 2: At this point, she may (or may not) progress into definitive more consistent seizure activity. During this phase, she has longer starring spells, periods of unresponsiveness (can't get her to listen or respond). These are much more obvious and would cause anyone who even knows her at all to ask 'what is wrong with her?' or 'what is she doing?'. During this phase she will still NOT be totally 100% unresponsive. During this phase, the seizure activity still comes in waves. She may suddenly stand up and decide and say she is hungry and reach for food or drink, or try to walk around. She can even chew and swallow or argue with you if you try to take it away. She may be confused, sometimes irritable, sometimes angry. She can often speak and even respond to yes or no questions almost as if she is running on instinct. This phase is only discernible from PHASE 1 in that the waves are more obvious and/or intense. She still will have periods of brief normal mental capacity. This phase may last upwards of 10 minutes.

PHASE 3: At this point she begins to get tired. She may nod off, or completely fall asleep. She may whine or make small grunts of frustration. She may twitch or quiver (even while sleeping) or complain of being itchy. It may seem that this is the post seizure phase, but she will continue to have more questionable light seizure activity (similar to PHASE 1) if awake, or even while sleeping. If she has remained awake, or if she awakes in this phase, she will have more coherence than she does in PHASE 2. She may be able to recite the alphabet. She may be able to count backwards from 10. But shortly after doing so, she may show another sign of 'seizure activity' such as have another starring spell or sudden unresponsive moment. Again, this may last upwards of 5 minutes and it is difficult to tell when it ends because she may be sleeping or the seizure activity will be mild and trailing off.

All in all, this entire 'episode' (all three phases) can last upwards of 20 minutes. This is difficult because it is hard to tell when the phases change. Also we were told to administer the Diastat (after 10 minutes), but she is likely in PHASE 3 and she may lucidly fight us or we may fight with ourselves on whether or not she is still showing activity, and whether or not it is dangerous for us not to administer it. We just don't know, and our stopwatches are very uncertain, and she may tell us that she is fine. We don't know if we should consider the seizure to be ended or not.

Anyone have any experience with this?

After these episodes subside, she may nap or not, but will be just fine. No lasting effects, and no real memory of the entire thing. She passes all her neurology exams without any problems.

We have had these >10 minute episodes ever day for 4 days in a row now. She is on Keppra, but they say it may take a little longer to fully start working.

Thanks in advance :D
 
Hi ConcernedDad, welcome to CWE!

What you describe sounds like Complex Partial Seizures -- these involve impaired awareness/consciousness, a bit like sleepwalking. During a Complex Partial, the person may say or do things that they have no memory of. Often there are automatic behaviors like grunting, or twitching. Because of this semi-conscious state, it can be tough to know exactly when the seizures are starting or ending. I recommend that you speak with your daughter's neuro about when it makes sense to administer the Diastat.

I hope the Keppra starts to work soon to control her seizures (which should obviate the need to use the Diastat.) But if the Keppra doesn't do the trick, or if it has problematic side effects, let the neurologist know. The are other meds to try. While your daughter's episodes may have no lasting effects at the moment, it's very important to prevent the brain from "getting in to the habit" of seizing, so getting control sooner rather than later is key.

One of the best things you can do is pay close attention to how your daughter is doing, and take detailed notes. That will give you a better sense of how her symptoms are responding to medication, as well as if she is experiencing any side effects. Did these seizures come out of the blue, or were there any prior symptoms? If there were, do you know if there were any particular triggers (like fatigue)? Identifying and avoiding triggers can also help to prevent the escalation of the seizures.

Best of luck to you -- I hope things improve soon for you and your daughter.
--Nakamova
 
Thanks for the reply Nakamova.

Yes, the doctor did label them as complex partial, but also noted that they have absanse like characteristics as well.

I will heed your advice, and we are working very closely with the neurologists. In fact, I'm awaiting their call back right now to discuss the meds.

I really posed this question to this user community because I wanted to see if this duration or cluster-like episodes are shared by anyone. I hesitate to call these episodes as 'seizures', I would rather refer to them as 'seizure activity' since it appears (at least to me) that she does have periods of coming in and out of it.

I have also noticed common triggers include being hungry or mild exhaustion. Or more specifically, they tend to happen around meal-time, or after physical activity.

Finally, I should note that she is 6.
 
I guess I would see clustered partial seizure activity as a seizure with "ragged edges." With absence seizures or partial seizures there isn't an easy marker like full loss of consciousness since only a part of the brain is involved. But for that part of the brain the seizure activity is significant and disruptive. Basically for treatment purposes, all seizure activity is concerning.

To make it more complicated, different folks define clusters in different ways, and there's no standard clinical definition. A long article about seizure clustering can be found can be found here: http://professionals.epilepsy.com/pa..._clusters.html Here's a relevant excerpt:
Clinical definitions of clustering:
There is no definitive clinical definition for a cluster or series of seizures. Studies examining clinically defined seizure clustering patterns have used varying empiric definitions, including two to four seizures per <48 hours; 3 seizures per 24 hours; or two generalized tonic–clonic or three complex partial seizures in 4 hours. Nonspecific definitions, such as "those having several convulsions within a day or two," have also been described. In a large randomized controlled trial of treatment for acute repetitive seizures, the condition was defined as "multiple seizures occurring with a 24 period for adults or 12 hour period for children, with a pattern distinguishable from the usual seizure pattern".

The strength of applying a clinical definition to identify seizure clustering is that it is easy to administer, with the information available from patient report or examination of diary or inpatient data. Patients can be instructed to institute treatment based on specific criteria they can easily identify, and studies of seizure clustering can stratify subjects into clusterers or nonclusterers based on diary data. Limitations include the possibility that patients with frequent seizures may meet these definitions by chance alone; alternately, for patients with infrequent seizures, two seizures may represent a cluster and be missed.

A strategy to address these potential weaknesses is to relate clustering to the individual’s unique seizure pattern, typically by defining clustering as a measurable increase over the patient’s typical seizure frequency. Investigators have considered a threefold or fourfold increase over usual seizure frequency within a 3-day period to represent seizure clustering. This approach requires sufficient follow-up so that typical seizure frequency or interseizure interval can be accurately determined, and often involves a sophisticated analysis technique.
So they're suggesting that for clinical purposes, a cluster could be defined as an unusual increase in seizure activity based on what your "normal" rate of seizure activity is. This is all new for you and your daughter, so at this point no one can say for sure what "normal" seizure activity is, and when to intervene.
 
This is interesting. It sounds like this definition of clustering is attempting to look at the larger scale of the seizures (how many you are having relative to normal) and not the behavior of the actual events themselves. I will have to be careful using the word 'cluster'.

After talking with the doc, I am now feeling a little better about what to do. Not to mention she had another one since my last post, and it fit her 'seizure fingerprint' exactly.

We were being too rigid with our decision of when to consider each seizure to be 'scary'. Instead, we will compare each of her seizures against our known fingerprint and only administer Diastat if the seizure deviates from this (persists longer, or changes to a different type of seizure). Also, if she does have 'clustering' as it is defined above we would also consider administering it. For her this would be more than one in about an hour, or basically if they occur close enough that her brain doesn't get a chance to fully bounce back from the first one.

This is what confused me, since I feel like each of her seizures are really a bunch of absence like seizures grouping together to form a complex partial. Or that they are just coming in waves and getting stronger and stronger and then subsiding. I know that kind of sounds strange, and I could be way off.

Thanks again for replying.
 
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