Nocturnal Seizures

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This is all brand new to me. My daughter is 5, and just diagnosed with complex partial seizure disorder after having at least 3 while in the hosptial for the stomach virus. Her EEG at the hosptial was normal (I think - discharge papers said that, but no one can seem to locate any report! Neurology never even came in to talk to me again.) MRI is normal.

All of her seizures have been at night or just waking up (she had some after the MMR shot which I thought was just a side effect.) Does this mean all of them will be complex partial, and what does a complex partial look like while sleeping? Now I am watching her for a bit while she sleeps and she is all over the place. Jerking, clenching her hands, extending limbs, chewing, frownight etc. I always thougth she was just an active sleeper, now I am wondering if everything I see is related? Could she also start having them in the day?

We are going back to the neurologist in one week. They said they didn't need to see her unless she had another seizure, but I need peace of mind that she isn't having them while sleeping.

She has walked, stripped, fidgeted while sitting, messing with the covers...tongue out, excessively rubbed her face etc. How much is normal, or something I should tell the doctor? I am trying to video tape things I see before we go, so she can see what I am talking about. Any info, advice?

Comments

Will she have an actual sleep

Submitted by Anonymous on Sat, 2015-04-04 - 01:52

Will she have an actual sleep deprived EEG since the one in the hospital was after a nap? That might be more likely to show something (no guarantees with EEGs tho').

Thank you both. I think they

Submitted by andie.ballard@gmail.com on Sat, 2015-04-04 - 12:50

Thank you both. I think they will be doing a video EEG next. We were admitted and spent 3 days there and discharged with instructions on doing an outpatient EEG (sleep deprived, etc.) However, she started vomiting 2 hours after coming home and couldn't eat or drink so I took her back the next morning - readmitted for 3 more days. They set up her EEG and gave me no warning. Told me it would probably be the next day, so to let her nap. They showed up 10 minutes after her nap, and said they would like her to sleep. When I questioned doing it the next day, bc they wanted her being sleep deprived, they said only for outpatient. I have no idea how they would see any spikes being that she screamed the entire time that her IV was hurting. Full blown, hyperventilating - sobbing. They asked if she usually cries herself to sleep - and I told them she rarely cries, and I have NEVER seen her do this. They totally blew that off. I took her for a 12 point QEEG for something else - psychologist brain mapping for other issues probably related to ADHD, and in the 60 seconds they monitored one point, she had 2 epileptiforms (SP?) over her C4 region. They were shocked her hospital EEG was normal - however they cannot diagnose or give any diagnostics info. They did write it up in her report which I will take the the neurologist - no idea if they will find it credible or not. Anyway, first hospital stay - saw a great neurologist. She said if they don't find answers on the EEG not to worry, we would do other tests starting with video EEG. She was very, VERY good - very in tune to Mia, and making how she felt as the patient top priority. Naturally, my daughter liked being in charge :) She was extremely helpful with all my questions (at the time, million more now!) and she was discharged with a note to follow up with her. After being readmitted and EEG done, the neurologist on call never even came to talk to me! The pediatrician came in and said Neurology said fine to leave, no medication, call only if she has another seizure. Well, how the heck would I know without an EEG or something very obvious like when she was sick and I was watching her sleep. I called for an appt, which usually takes 6 months to get in with the doctor, 4 months with nurse practitioner. I think God opened a door for us, because someone must have just canceled and we got in next week with the actual doctor we saw already, and liked! She isn't one of the doctors in the group who lists her area of Professional interest as epilepsy....Does that matter? I kind of thought...we can get in, see her, and consult another one if need be before moving ahead with meds etc? I think to see one of the others we could be looking at a 6 months wait. Or should I wait for an appointment with one who lists their area of professional interests as Epilepsy?Sorry so long - I have a terrible time not being long winded!

Thank you both. I think they will be doing a video EEG next. We were admitted and spent 3 days there and discharged with instructions on doing an outpatient EEG (sleep deprived, etc.) However, she started vomiting 2 hours after coming home and couldn't eat or drink so I took her back the next morning - readmitted for 3 more days. They set up her EEG and gave me no warning. Told me it would probably be the next day, so to let her nap. They showed up 10 minutes after her nap, and said they would like her to sleep. When I questioned doing it the next day, bc they wanted her being sleep deprived, they said only for outpatient. I have no idea how they would see any spikes being that she screamed the entire time that her IV was hurting. Full blown, hyperventilating - sobbing. They asked if she usually cries herself to sleep - and I told them she rarely cries, and I have NEVER seen her do this. They totally blew that off. I took  her for a 12 point QEEG for something else - psychologist brain mapping for other issues probably related to ADHD, and in the 60 seconds they monitored one point, she had 2 epileptiforms (SP?) over her C4 region. They were shocked her hospital EEG was normal - however they cannot diagnose or give any diagnostics info. They did write it up in her report which I will take the the neurologist - no idea if they will find it credible or not. Anyway, first hospital stay - saw a great neurologist. She said if they don't find answers on the EEG not to worry, we would do other tests starting with video EEG. She was very, VERY good - very in tune to Mia, and making how she felt as the patient top priority. Naturally, my daughter liked being in charge :) She was extremely helpful with all my questions (at the time, million more now!) and she was discharged with a note to follow up with her. After being readmitted and EEG done, the neurologist on call never even came to talk to me! The pediatrician came in and said Neurology said fine to leave, no medication, call only if she has another seizure. Well, how the heck would I know without an EEG or something very obvious like when she was sick and I was watching her sleep. I called for an appt, which usually takes 6 months to get in with the doctor, 4 months with nurse practitioner. I think God opened a door for us, because someone must have just canceled and we got in next week with the actual doctor we saw already, and liked! She isn't one of the doctors in the group who lists her area of Professional interest as epilepsy....Does that matter? I kind of thought...we can get in, see her, and consult another one if need be before moving ahead with meds etc? I think to see one of the others we could be looking at a 6 months wait. Or should I wait for an appointment with one who lists their area of professional interests as Epilepsy?Sorry so long - I have a terrible time not being long winded! 

Thank you both. I think they will be doing a video EEG next. We were admitted and spent 3 days there and discharged with instructions on doing an outpatient EEG (sleep deprived, etc.) However, she started vomiting 2 hours after coming home and couldn't eat or drink so I took her back the next morning - readmitted for 3 more days. They set up her EEG and gave me no warning. Told me it would probably be the next day, so to let her nap. They showed up 10 minutes after her nap, and said they would like her to sleep. When I questioned doing it the next day, bc they wanted her being sleep deprived, they said only for outpatient. I have no idea how they would see any spikes being that she screamed the entire time that her IV was hurting. Full blown, hyperventilating - sobbing. They asked if she usually cries herself to sleep - and I told them she rarely cries, and I have NEVER seen her do this. They totally blew that off. I took her for a 12 point QEEG for something else - psychologist brain mapping for other issues probably related to ADHD, and in the 60 seconds they monitored one point, she had 2 epileptiforms (SP?) over her C4 region. They were shocked her hospital EEG was normal - however they cannot diagnose or give any diagnostics info. They did write it up in her report which I will take the the neurologist - no idea if they will find it credible or not. Anyway, first hospital stay - saw a great neurologist. She said if they don't find answers on the EEG not to worry, we would do other tests starting with video EEG. She was very, VERY good - very in tune to Mia, and making how she felt as the patient top priority. Naturally, my daughter liked being in charge :) She was extremely helpful with all my questions (at the time, million more now!) and she was discharged with a note to follow up with her. After being readmitted and EEG done, the neurologist on call never even came to talk to me! The pediatrician came in and said Neurology said fine to leave, no medication, call only if she has another seizure. Well, how the heck would I know without an EEG or something very obvious like when she was sick and I was watching her sleep. I called for an appt, which usually takes 6 months to get in with the doctor, 4 months with nurse practitioner. I think God opened a door for us, because someone must have just canceled and we got in next week with the actual doctor we saw already, and liked! She isn't one of the doctors in the group who lists her area of Professional interest as epilepsy....Does that matter? I kind of thought...we can get in, see her, and consult another one if need be before moving ahead with meds etc? I think to see one of the others we could be looking at a 6 months wait. Or should I wait for an appointment with one who lists their area of professional interests as Epilepsy?Sorry so long - I have a terrible time not being long winded!

Stick with the one yo ulike

Submitted by Anonymous on Sat, 2015-04-04 - 14:52

Stick with the one yo ulike and will work well with your daughter. As for EEG's I had 20-25 all come back normal. I fell asleep in pne in which they found abnormalities. The neurologists knew I had been having seizures so they specified the type of abnormalities they needed to look at. Knowing this helped and by sleeping they showed up. The reason is because teh brain isn't processing a lot of information while sleeping. So a sleep deprived EEG can and generally does show more. Oh and I do know that my neurologist does assist pediratic neurologists with information meds and other procedures. I started out with the group of neurologists I have been with since 1970. They started going into specializations in the late 1980's. So I was moved to another neurologist he retired and I got the next. I have been with specialists since the early 1990's. So by getting a good realtionship I ave been able to get answers to many questions with a phone call. Which you might be doing if you like this neurologist and your daughter does.If she is prescribed meds then please keep an eye on her as she grows. I had to have my dosages changed 4 times in less then a year mainly because I went from 4'8" and 85 lbs to 5'6" and 135 lbs. meds are generally set with weight. If it is to be taken 2 times a day then those times need to ge 12 hours apart. I hope this helps and she gets seizure free Joe