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DrRussMD
DrRussMD, Board Certified MD
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Experience:  Board certified Internal medicine and Integrative medicine. Many years of experience all areas.
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My question is this; is there an alternative way to eeg of

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My question is this; is there an alternative way to eeg of ruling non epileptic seizures in or out? Can neurologists really say that unless a person has one specific type of seizure, then every other event is part of a conversion disorder without clinical evidence?
History: my 17 year old daughter's neurologists have failed to capture any pnes, although plenty of her eeg's (more than 8 eeg's, including some video telemetry) have captured one type of epileptic seizure (one recording shows some 30+ generalised spiking seizures over a 24 hr period with some of these clustering in a 5 minute period). She was diagnosed frontal lobe, idiopathic epilepsy at age 9.
She has frequent issues with clustered and continuous seizures and has developed various seizure types. Drs sometimes think this is epilepsy and then change their mind and say that they think it's possibly pnes. Our problem is the psychiatric/hypnosis work hasnt helped over the last 2 years and to us it all continues to affect life in a big way. She appears as a normal 17 yr old with friends (who are amazing with her) but she is not in school, long story involving nervous school!
Meds she is on - 1500 mg trileptal (spilit into 4 doses). She has just been weaned off epanutin and since this has happened, the frequent drop seizures have nearly all disappeared.
She has been through 7 drug trials since her diagnosis in 2005 and 5 of these were over a period of 5 months during an unexpected long term hospital stay. She has extreme adverse affects to loading of AED's and has a low tolerance of all used. She spent 6 mths in a wheelchair unable to use her trunk (sit forward or walk). After a lot of tests (including a nerve conduction study showing no issues with nerves / muscles in legs), she was diagnosed with conversion disorder.
She currently is experiencing 60 seizures per week. Last SE event was 4 wks ago.
From what I have read, I sometimes feels she leans towards Lennox Gastaut, without the intellectual disability (although she is below her age standard).
The last eeg was in in mid 2012 and there was no issue with other seizure types or prolonged seizure events then.
I know this is complex, so I apologise, but we as a family are becoming so frustrated with the frequent about turns that some neurologists in my country seem to make.
Regards
Nicola
Submitted: 3 years ago.
Category: Medical
Expert:  DrRussMD replied 3 years ago.
Hello
First of all
Has she had a sleep deprived EEG
Video EEG?
Customer: replied 3 years ago.

Hi, yes she has had both and both captured her generalised seizure.

Its a short (30 sec to 1 min) convulsive (usually her right limbs jerk more) seizure. She resolves immediately with no post ictal issues.

Expert:  DrRussMD replied 3 years ago.
So the current conclusion is conversion disorder?
Customer: replied 3 years ago.

A month ago, I videod a few mins of a prolonged event requiring hospitalisation. The neurologist she is seeing now is thinking that maybe more seizures than we are aware are of a psychogenic nature. What I see is a lot of seizures, coupled with some unresponsive agitation.....

She hasnt had an eeg since developing SE and new types of seizures.

Expert:  DrRussMD replied 3 years ago.
Have there been any psych problems or evaluations?
Customer: replied 3 years ago.

psych eval does suggest some anxiety, but not as a disorder. She is just 17, so its a kind of anxious age.

There is no abuse, trauma or anything one would expect from such a severe type of ptsd, no? However, she does work on attachment issues with counsellor and continues with a psychiatrist. She has also had hypnotic therapy over a period of months. I haven't seen any difference......the neurology team made the diagnosis, not the psychiatrist and unfortunately in Ireland we are very short on neuropsychiatrists....

I wonder if I should ask for a lumbar puncture? This is the only test she didn't have and given that she has a history of poor gait, immobility, etc and a grey area nr the thoracic on her spine mri, I wondered if she suffered some kind of cns insult?

Expert:  DrRussMD replied 3 years ago.
I would want an MRI of the brain if that has not been done.
I don't see a reason for a lumbar function unless CNS infection were suspected.
I would look at B12 levels as well.
Thyroid
Magnesium.
If there have never been findings on EEG then that is a problem...as it goes against epilepsy.
OK, so that is an initial answer….
Please use reply to expert if you have further questions. When you are ready, please click a positive rating [hopefully excellent]. If you forgot something, come back. I am here daily.
Customer: replied 3 years ago.

Hi Dr Thomas

Thank you for your response.

I think I may have confused you. All of her eeg's show a spike wave denoting epileptic activity! What they havent found is non epileptic seizures on the eeg!

The conversion disorder was borne from drs unable to find a physical reason for her being unable to use her trunk to walk. However, I felt at the time that the loading doses of drug trials which were immediately unsuccessful due to her very low tolerance and suffering extreme side affects. Because the conversion disorder diagnosis was there, drs felt that once she started having more problems at home with seizures, that these prolonged events were probably part of the conversion disorder, hence pnes....her mri was normal in 2012.

What I have been told is 'if Katie is not having a seizure that lasts up to 1 min only and resolves quickly, then this is probably pseudo'!

Im wondering how I can get the proof, is it back to eeg, stripping meds at same time?

Thank you

Nicola

Expert:  DrRussMD replied 3 years ago.
Yes
Additional seizure foci can be undetectable
On the other hand, there is no proof of conversion disorder, other than a response to treatment.
Some of this is a moot point.
Medications should be adjusted to minimize seizures.
OK, so that is an initial answer….
Please use reply to expert if you have further questions. When you are ready, please click a positive rating [hopefully excellent]. If you forgot something, come back. I am here daily.
Customer: replied 3 years ago.

Taking on board your advice regarding getting levels done, we will do that.

Unfortunately, Katie has not tolerated the increases required since puberty! Her tolerance levels are off the charts......so med changes are slow and cause low functioning.

She is not a candidate for lobectomy, because the seizures stem perhpas deep from the cortex/frontal lobe. She is not a candidate for ketogen diet because her age complicates this. She left the children's hospital with 'that's all we can do' and entered the adult care with an attitude of 'let's try get the care right'. After 8 months, we are still none the wiser about why / where these new seizure patterns come from.

She would like stem cell treatment and its of importance, if we are to ever go down that route, to tie down this singular or dual diagnosis.

Regards

Nicola

Expert:  DrRussMD replied 3 years ago.
I would see no indication for lobectomy.
There is no stem cell treatment that is proven or scientific at this point.
Please use reply to expert if you have further questions. When you are ready, please click a positive rating [hopefully excellent]. If you forgot something, come back. I am here daily.
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