General Medicine

» redback - Negative results?

My 15 yo great-niece, was recently admitted to hospital with a short history of seizures.

After the description, my immediate thought was (grand mal) epilepsy but per 3rd hand later feedback, both the EEG and MRI were 'negative'. They kept an eye on her for a cuppla days but she is to be discharged today (Saturday 3rd) without anti-seizure medication as they've found no cause.

That makes sense but it's not necessarily re-assuring to find the tests didn't establish anything.
Wait and see if it recurs? Maybe it won't and it'll stay unexplained?

Has anyone experienced this problem...any suggestions? Thanks!

-- posted by redback

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» Jennifer Gerics - Negative results?

In response to Negative results? posted by redback:

Does your great-niece have a neurologist? If so, what does he or she say? Sometimes epilepsy isn't diagnosed right away. If you feel that not enough is being done, it's always smart to get a second opinion.

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» redback - Negative results?

In response to Negative results? posted by JenniferGerics:

Thanks. Stevie-lee is still in hospital as an "acute" patient and I tell her she is a cute patient. This is our leading childrens (teaching) hospital so I'm confident she is in the right place.. Having said that, she is not seeing their top neurologist yet as far as I can tell. More waiting than seeing anyone so she's allowed to wander the hospital grounds. Her intended private neurologist hasn't seen her yet as she was admitted the day before the first appointment. BUT I'll certainly be encouraging the 2nd opinion.

Since my post I've learned still 3rd hand, there is some calcification(!) on the brain lining(?) but that it has nothing to do with the seizures. Tis a very busy hospital and she is booked for an all night EEG this Thursday with nothing happening for days.

Of course kids oughtn't to be prematurelty diagnosed with epilepsy because of its label etc but then we only speculate about the other possibilities. Her mum told me they want to check for lupus so she's checked that and worries about it. Meanwhile, Stevie-lee is not expressing any worry except she doesn't want her schoolmates to know.

-- posted by redback

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» Jennifer Gerics - Negative results?

In response to Negative results? posted by redback:

Yes---diagnosis can take forever! It sounds like you are in pretty good hands, so try to trust the process, even though it can be maddening. I'm glad your great-niece isn't frightened. Keep us updated and good luck!

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» redback - Negative results?

In response to Negative results? posted by JenniferGerics:

I have this belief that my health is too important to leave to any process. Not all doctors appreciate my questioning but then I can't ignore a career of questioning standards of medical evidence.

Last night and overnight, my great-niece experienced 3 seizures while attached to the EEG. It seems mum understood she needed to keep her daughter awake as long as she could to induce a seizure. This time, Stevie was aware yet unable to speak so seemed scarier for her than earlier seizures. But she was quite prepared for medication despite an earlier aversion to any medication.

She had earlier witnessed a fellow patient, younger, experiencing a seizure without that child's mum or nurse or her own mum around. Calmly called for help.

Anyway, I sat in on the discussion today. Doctor-speak is she probably has epilepsy and its probably focal epilepsy but may possibly need a lumbar puncture to rule out other causes but they won't know until they examine the results of the blood test taken 2 days before that her doctor didn't know about or remember.

The increased seizures are probably due to lack of sleep and the extra medication (Clobazam) is to help break the cycle and then she stops taking it.

She is to start on Tegretol and Clobazam tonight (8 Feb) needs a few seizure free nights before discharge and again before a return to school.

I've given some detail in case other readers are new to the experience.

-- posted by redback

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» redback - Negative results?

In response to Negative results? posted by redback:

Well, my great-niece ended up back in hospital for an ecxision of a pilonidal cyst and sinus, described to her as an old man's hairy bum's disease, described it as a very painful experience, wanted no visitors and is off school after a very brief return.

She was too embarrassed to report the sinus earlier. The related website strongly encourages women to report this problem as the consequences can be severe. A little embarrassment letting a doctor look at your bottom is a very small price?

-- posted by redback

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» Jennifer Gerics - Negative results?

In response to Negative results? posted by redback:

Ouch---I read up on the condition. I hope she's doing better. How are the seizures?

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» redback - Negative results?

In response to Negative results? posted by JenniferGerics:

Thanks for responding. I haven't checked in here for a while. Her seizures have fully settled it seems...touch wood...as I touch my head. .

-- posted by redback

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» Jennifer Gerics - Negative results?

In response to Negative results? posted by redback:

I'm glad the seizures have stopped. Keep in touch---- you're a very humorous correspondent! Good luck...

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