New to this site: Introduction

[Abilene220]

Hello, everyone. A bit more than a year ago my then 29-year-old son began having nocturnal seizures for no apparent reason. He has had all the usual CAT scans, MRIs, EEGs and cardiac workups. No help really, and we doubt whether the EEG is really his as the doctor claimed it looks like one from a 9-year-old.
Seizures (always nocturnal) are increasing from every 5 months or so to every 4-6 weeks. Drs. keep increasing Keppra (up to 3,000mg/day and have added 25 mg. Lamictil, and just increased that to 50.
Sleep deprivation seems to cause at least some of the seizures.
We are now investigating possibility of black mold and any possible role, but have just begun that process.
Will see naturopath soon and hope to go to Johns Hopkins for a workup.
Neurologist is uninteresting in anything but getting paid. Horrific. We are changing neurologists.
That's it--except my son is getting pretty despondent--and so am I.

 

[Nakamova]

Hi Abilene220, welcome to CWE!

I'm glad that you and your son will be seeking out a new neurologist. Having a knowledgeable and responsive doctor can be half the battle. Johns Hopkins is an excellent epilepsy center, so hopefully you will have better luck there.

It's completely understandable that your son would be despondent. But it's worth noting that depression and moodiness can also be a Keppra side effect. So if his mood seems unusually dark, make a note of it and let the neuro know when you see him.

If you haven't checked them out already, these are great threads to start with here at CWE:
http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

Best,
Nakamova

 

[Abilene220]

Thanks for both the enthusiastic welcome and the excellent information. I was encouraged by reading at the two places you suggested and will have my son read them, too. My son will be seen, we found out today, by Dr. Gregory Krauss at J. Hokpkins, one of the co-authors of a 2012 study about "pseudo-seizures." We are keeping our fingers crossed. Do people on this site recommend specific doctors? We, like you are in New England and just want to amass all the information we might ever need.

Thanks again.

 

[Eclipse]

Hello all New to all this ....

Hi all, i have registered for this site as my 3 year old daughter has newly been diagnosed with epilepsy anf has had her first seizure in front of the doctors after having her MRI on Monday NZT, her dad has tonic clonic epilepsy and so i know a little bit about his but i am a new mum for a child with this, reall need reassurance and i keep wanting to get up 100 times during the night to check on her,
she has started 2mls of epilim 2 times a day and next week will start on 3.75mils 2 times a day
Hi with my daughter seizures she falls unconscious unresponsive and goes white like a ghost then blue then white like a ghost,her bottem jaw moves side to side and the top jaw follows, she also has no recollection of what happend, when her eyes open she bites down on her bottem lip with a grin not a smile and that lasted for about 2 minutes, and then still no reaction from a pen light or me talking to her , i heard that her going blue this is because of her chest muscles spasming, we are in day 2 after the seizure and she still has a sore chest and back, she also complains of a sore leg, she doesn't flex or jerk like you see with other seizures, just makes a funny noise like all the air has escaped out of her body, i was holding her at the time and he head flopped back with no responce her limps were floppy and i was just plain scared,
(i am new to all this eplipsy episodes,) .... they havnt told me what sort of epilipsy she has or if this would be short lived (i mean grow out of having these seizures)

 

[tiggy'smom]

Hi Abililene, and welcome. I was 35 and had my first seizure at the bedside of a patiient whilie working as an RN. 9 years later all tests run and re-run and no answers. I was on keppra fo 2 months and had severe panic/anxiety attacks and rage so watch your son and have him keep ( he may kick his feet) a journal of how he is feeling and how his moods are changing on all the meds. Good luck at Hopkins, I hope you guys get the answers. Does he grind his teeth at night> you can get a night gaurd over the counter. How did they determine the seizures were "nocturnal"? Did he have the 24 hr EEG? I wish him luck and for you keep the faith.

 

[Abilene220]

What to expect from a good neurologist

Thanks for all that valuable information, Tiggy's Mom. I think he does grind his teeth, and we have been discussing a night guard. I wonder why you bring that up?

They know his seizures are exclusively nocturnal because he has such typical after effects: severe headache and sometimes nausea; intense fatigue and need to sleep for hours afterwards, and petichiae.

Yes, the EEG was a 24-hour one, but again, we are unsure it is his.
This neurologist does not even call my son when he's called to ask questions or inform the doctor of a seizure. His records at last check were not up-to-date. I am crossing my fingers he will go to Hopkins, but they offered him only an appointment with the doctor and a new MRI, so he feels they will have nothing more to offer him.

Does anyone know what the interview with a good neurologist will be like and what else Hopkins might offer my son? We live 11 hours away by car, so we'll have to fly and spend at least one night. The point is this: Son is reluctant to go to that trouble and expense if no further investigation or testing is offered. He was hoping they'd induce a seizure so they could see what happens.
Does anyone one know how doctors determine whether seizures are epileptic or stress-induced? Hopkins did that now rather famous study that found up to 1/3 of their patients diagnosed with epileptic seizures had stress-induced seizures instead.
Tough times as you all know.