Extended EEG at the hospital for my daughter

[Taximom]

Hello everyone,

My daughter is 14 yrs old, and began having grand mal seizures in her first year. They attributed it to fevers until a few happened w/o fevers. Then we noticed absence seizures. She had enough to where we ended up medicating her, which kept them from happening for many years. About 2-3 yrs ago, she started having partial seizures. They went on for a few months before we realized that's what they were, because they were just brief outbursts, and she just looked scared and yelled my name. Once I saw her hand get stiff, that clued me in that they might be some type of seizure. So we kept track of them, and the frequency, and her neuro medicated her for those with a different med, and they stopped. All along, the various MRI's, CT Scans, and other EEGs have all been "normal".

So now she's on Keppra and Trileptal (but the generic versions), and about a month ago we think she started having the partial seizures again. They doubled her trileptal, which stopped them mostly (we think) within a week. They told us that they want her to have a 3-5 day extended video-EEG in the hospital to see what they can find. My daughter also is non-verbal, and has ADHD (or ADHHHHHD as I like to call it ha), and has severe cognitive delays. I have a call in to her doctor to ask the following questions, and I wonder if they are legit questions to any of you who have been through this.

1. What is the danger of weaning her off of meds to increase the chance of having a seizure there? What if her seizures start to be uncontrollable? (I don't know what they can do in a hospital to stop a seizure?) This scares me.

2. All of her past tests have been "normal", and I was told once that some seizure activity can't be detected via an EEG because it's deeper than leads can detect. Why would this EEG have different results? If they don't detect EEG activity, are there more tests to do?

3. What will be done differently if they DO find seizure activity? Won't her current meds be enough?

Do those sound okay? Do any of you know the answers just from your experiences? Plus the COST... Omgosh, I think we are still paying for my labor and delivery with her. lol I am not looking forward to this bill.

Anyway, if anyone can help calm me down about this, I would appreciate it. Thank you for your time. I have to go get her from school, but I'll be back later! <3

 

[masterjen]

Hi, and welcome to CWE. Lots of people here to offer input, but here is my 2 cents worth.
1. Weaning off medication - if warranted - is safest done in the hospital setting, and something the docs may choose to do.
2. Sometimes the EEG during a VEEG may still be normal, but based on visual observation of the seizure the seizure may still be determined to be epileptic in nature.
3. If seizure focus can be determined, your daughter may be a surgical candidate. There may be clues as to the exact type of seizure (which may indicated a different type of med. is needed), and any other testing done might help dictate what type of medication is needed as well (one that acts on potassium channels, the calcium channels, GABA, etc.).

Keep us posted on how it goes and good luck

 

[Kgartner]

We just an inpatient video EEG with my 16-year old daughter - it was scheduled for a week, but we got out of there after 4 days because she had seizures so quickly. It was an ordeal, but worth it. I totally understand your concerns, and you should make sure to clarify exactly what the goals of the study are, but if her doctors are recommending it I suggest going ahead and doing it.

If your daughter has frequent seizures even while on medication, a medication reduction or withdrawal may not be necessary. But in most cases it is. The point of a video EEG is to capture a seizure on EEG, not just the interictal EEG patterns which may not tell your doctor enough to guide your daughter's treatment. So if her typical seizures do not happen on a daily or every-other-day time frame, a medication reduction may be needed.

If that is the case, I totally understand your worry about uncontrolled seizures! That was one of my big concerns (right after not having any seizures at all, which shows you how bizarre your emotions are during this process!). However, they really do know what they are doing and they take numerous precautions:
- they will likely wean her medication gradually rather than take a "cold turkey" approach so that she will have her typical seizures (in my daughter's case they took her down almost half on her meds, and she had a seizure within 36 hours) - they really don't want withdrawal seizures or status so they will be careful with a med wean!
- they will insert an IV right at the beginning of her hospitalization so that rescue medication can be administered immediately should it be necessary
- nurses, EEG techs and residents will all come running when she does have a seizure

If you are in a tertiary level epilepsy center you are in such good hands! Honestly, it is the safest place in the world to have a seizure. You are in a place where everyone knows exactly what to do when seizures happen - I felt completely cared for.

It is still an ordeal, don't get me wrong. Waiting for a seizure to happen is painful, and then watching your child have seizures (my daughter had 4 before they reintroduced her meds) is even more painful - but you know that already! We learned so much from the process, and it was completely worth it:
- we verified that the daily events she was having were simple partial seizures - this was huge because there was some question about whether these were epileptic or psychological in nature
- we learned that all of her seizures originate in the left temporal lobe, so we are moving forward with her pre-surgery evaluation
- finally we saw a new type of seizure that she may be having during sleep that I had never observed

Since we had never captured a seizure on an EEG before, learning where her seizures originate has been very helpful to me and to her doctor as we try to understand her prognosis and treatment options.

Feel free to ask additional questions. We just did this 3 weeks ago so everything is fresh in my mind!