Epilepsy Unit - worth it?

[AngelaVA]

Our providers have been talking to us about admitting our 6 year old to the epilepsy unit for 3 days. They would probably pull her meds the second day after having a night to try to see if she is having nighttime seizures on her meds. They basically just said "it could give us more information to help treat her more effectively" which sounds good but I have heard that before about other testing that turned out to be pretty arduous for us and not very helpful in the end. What has been your experience?


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[AlohaBird]

Well, for me, getting my health plan to authorize any additional testing is like pulling teeth.

If your plan actually wants to give you more information, I would say take it, take all you can get.

It might end up telling you nothing but it might give you the key, you don't know until you try.

I guess my question isn't so much "why" do it as it is "why not".

 

[AngelaVA]

Why not would be that it will be stressful and disruptive to a child who has had a ton of stress and life disruptions due to medical issues already. If I said yes to every therapy and specialist it's been suggested we see she would do practically nothing but therapy and doctors appointments. I have to be judicious about which ones will give us the most help for our efforts.


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[AlohaBird]

Why not would be that it will be stressful and disruptive to a child who has had a ton of stress and life disruptions due to medical issues already. If I said yes to every therapy and specialist it's been suggested we see she would do practically nothing but therapy and doctors appointments. I have to be judicious about which ones will give us the most help for our efforts.

True, it would be a different cost/benefit analysis with me deciding for my healthy adult self as opposed to you deciding for a child with medical issues.

For me, I just wish there were such a thing as an "epilepsy unit" available to me. That sounds like some very concentrated time with people who have very specialized training.

 

[masterjen]

Our providers have been talking to us about admitting our 6 year old to the epilepsy unit for 3 days. They would probably pull her meds the second day after having a night to try to see if she is having nighttime seizures on her meds. They basically just said "it could give us more information to help treat her more effectively" which sounds good but I have heard that before about other testing that turned out to be pretty arduous for us and not very helpful in the end. What has been your experience?


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It is not easy to decide on a long-term video EEG, esp. where a child is concerned. Some things that may be worth considering in making the decision:
1. How often her seizures occur. If they occur less frequently than every 3 days, it is possible that the timing of the hospital stay will be such that a seizure will not occur;
2. Half-life of her medication (eg. the half-life of one of mine is 105 hours, so a 3-day video EEG would not be long enough in my case because not enough of the medication would be out of my system).
3. What have standard EEGs shown, and if abnormal why is this not sufficient information to go on (a question for the doctor).

For me the VEEG was worth it, because all my standard EEGs were normal. During my hospital long-term video EEG my EEG was still normal but the video showed clear nocturnal seizure activity.

 

[AngelaVA]

It is not easy to decide on a long-term video EEG, esp. where a child is concerned. Some things that may be worth considering in making the decision:

1. How often her seizures occur. If they occur less frequently than every 3 days, it is possible that the timing of the hospital stay will be such that a seizure will not occur;

2. Half-life of her medication (eg. the half-life of one of mine is 105 hours, so a 3-day video EEG would not be long enough in my case because not enough of the medication would be out of my system).

3. What have standard EEGs shown, and if abnormal why is this not sufficient information to go on (a question for the doctor).



For me the VEEG was worth it, because all my standard EEGs were normal. During my hospital long-term video EEG my EEG was still normal but the video showed clear nocturnal seizure activity.

1 - currently she is going 3-4 weeks with no obvious seizures and then she will have a cluster of 4-5 seizures within a week period, so yeah, how would we ever know if we will hit the right week.
2- I don't know, med is oxcarbazepine
3- She has one abnormal EEG that shows focal (partial) seizure activity. I think they are hoping to see one of the clusters she's is experiencing to determine if it's still the same seizure type. There's also a question as to whether she's having nighttime seizures that we are missing. My 9 yo shares a room with her and has reported seeing seizure activity at night time.

We also talked about doing a portable EEG at home but we weren't sure how compliant she'd be with not messing with the leads.


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[masterjen]

The half-life of oxcarb. in its pure form is 1-5 hours, but when the body processes it into a derivative http://www.ncbi.nlm.nih.gov/pubmed/12959634 the half-life ranges from 7-20 hours.

I've never had an ambulatory/portable EEG at home, but almost did as it could have been a long wait to have an in-hospital one. I was told the wires and recording device are well-covered and the leads on the head are attached with a much stronger glue than is used for standard EEGs. Worth asking to speak to the technician who will set the device up on your child exactly how it will be done. A portable EEG could be the first step perhaps, and if problems with keeping the wires on etc. then moving on to the in-hospital video EEG if you feel okay with it. Ideally the portable EEG will also have video, but not all do.

 

[Belinda5000]

As many times as I've been in an epilepsy unit, I was never in one as a child.
My seizures got worse as I got worse and went through puberty.The older I got the worse they got.The epilepsy units as an adult were terrible.They were suppose to be good. They didn't help me any and I was lucky to see anyone.

 

[Hobbes]

Hi,

I'm new here but I thought I would comment on how an extended day EEG impacted our family. Our 9yo has a congenital neurological issue and started having episodes around 4-5yo that we later understood to be partials.

We did a five day EEG. Originally chosen because my daughter was still reporting episodes once a week. She had classic reports of abdominal seizures, abnormal smells and tastes and one other type of episode. Very rarely she had staring episodes (>30 seconds to minutes) sometimes followed with major confusion. Her neuro thought those were complex partials and the descriptions of CPs that were temporal absence were spot on for what we saw. Her second EEG (sleep deprived) showed abnormal discharges (spikes) during sleep in right temporal area. She was on two medications about 2.5 years after diagnosis. About a month before the EEG she stopped reporting any episodes. I was very worried the EEG would be a waste of time.

Multi day EEGs are mostly boring. Bring loads of things to entertain your child. Bring variety of stuff because cognition may change as the medication is taken off. It's never fully out of their system as it takes ~5 or so half lives which exceeds the test period. Last day was ramping back onto medication. Getting the leads put on is not fun, seems more industrial than leads used for shorter EEGs.

We didn't see any partial seizures. Eventually they saw regular recurring atypical absence and myoclonics as the drugs left her system (hourly) and I didn't report these real time as they were too easy to miss. So things had really changed, seeing generalized seizures that are usually associated with severe syndromes was a surprise. Completely changed the treatment direction. Still get reports of partial like episodes very rarely. Dropped the AED that only treats partials and is only taking AED that can treat both types. Originally we were trying to get off that med as child can't tolerate more.

I did boatloads of laundry before and after. We have two other kids still at home.

Sometimes it is worth it. Scheduling it took a while.

 

[Topcat]

I freaked out when I had an EEG they should find out EXACTLY what the place will do and how their child will respond.

 

[seagull]

Are you in the States because if you in Uk place called st piers I forgot full proper name national unit young people with epilepsy I think...It would proberly be one top places in the world for children with e

 

[Hobbes]

Hi Topcat,

We are very familiar with our hospital (5 shunt surgeries there before 5 day EEG and one since, lots of stays without surgery) but they have a PDF booklet outlining what will happen and for kids with any serious issue they can use sedation. My kid was thrilled to find EEGs in hospital were without an IV. And Legos were involved.

 

[AngelaVA]

Thanks you all for sharing your experiences. At the time I posted this we ended up settling on an overnight EEG that she would wear home. We didn't see any seizures (which is good because she was on her meds) there were continuing abnormalities but not as many abnormalities as her original EEG so we took that as a sign that things were going well.

That was 9 months ago at this point we still see neurology every few months, I think it this point I would say ok to the epilepsy unit if it could help us make sure her medication and dosage were appropriate. It would be nice of them to actually see a seizure on an EEG, there are times when I feel like she probably has had a seizure but I'm uncertain.


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