Daughter having nighttime seizures now?

[karenb68]

My daughter has had several T/C's this year, and we suspect several absence seizures as well. Her neuro dx her with partial complex. After her 3rd one, the neuro put her on 300mg Trileptal twice a day. At her last appointment, she wanted to double the dose. I used some of the 300 tabs to go first to 900 for a couple of weeks before going to 1200 total.

So after increasing the Trileptal, she started school last week. I woke her up one morning last week and she was impossible to rouse up. I noticed her eyes were unevenly dilated, the right pupil being slightly larger. I kept her home because she was obviously exhausted, and called the neuro's office. The nurse finally called back and I told her about my daughter's eyes and that she also was complaining of a headache on the right side. She slept most of the day, then finally perked up in the late afternoon/early evening. Doc was out of the office til Monday, and had the nurse call back and say it was possible she had had a seizure during the night/early morning. Then today I woke her up (a little later than usual) to go to doctor appointment a couple of hours away. Same thing, right pupil larger than the left, extremely tired. She slept about 10.5 hours last night, an hour and a half on the way to the doctor, and over two hours on the way home. Now she seems okay again. I have seen many folks here talk about nature of seizures changing, but this was one week apart and she usually runs 3-6 weeks with her TC's. I guess if she has to have them I should be grateful she's in relatively safe in bed.

She also came to me the other day and said "I think I had a hallucination at school yesterday" (I didn't know she knew that word, LOL). She was standing in the hallway talking to a friend but thought she was standing outside on the playground and was "seeing" the outside. I asked if it really seemed real or if she knew it was "off" like when she's dreaming something and she said she knew it was "off". I stayed calm and told her not to panic, but I'm sure it freaked her out. I've seen a few references to hallucinations and told the nurse about it today when I called to her about the dilated eye again. Anyone ever have this happen--with the eyes or any hallucinations?

 

[Endless]

Hi, Karen,

Question: how old is your daughter?

Sounds like she may have temporal lobe epilepsy. Hallucinations are something that goes along with that. Those are simple partial seizures. Complex partials are when someone has altered conciousness, but aren't convulsive. But they are different than absence seizures. Here's a description of the different types. Look and see if you recognize your daughter's seizures: http://www.epilepsyfoundation.org/answerplace/medical/seizures/types/

I have temporal lobe epilepsy, and I've had hallucinations. Not to the extent your daughter has. I saw a 3D ghost face pop out of the tv once, and sometimes I see people that aren't there. Sometimes they come and go so fast it's like a whisper - whoosh and they are away.

Usually when I'm having a seizure I have no idea what is going on. Either I'm so puzzled trying to figure out what's what, or I'm just immersed in whatever is happening. My brain is so busy having the seizure there's not a lot of time to notice what's off, and what isn't. Sometimes they scare the living daylights out of me, sometimes just puzzle me.

Unequal pupils... I know someone in here has mentioned that. Maybe they will read this and join in.

 

[karenb68]

Thanks Endless. She is 12 and had her first t/c in April. I have pored over material from the doctors office and online and I'm not sure that partial complex is what I've been seeing in her, but I figure the doctor knows what she's talking about more than I do. We didn't see any altered consciousness leading into the TCs--the first one she held her breath and dived underwater in a pool and nearly drowned, she never fought to breathe or move. I've only been in the room with her one time when a TC was beginning and her head dropped for just a second, then snapped back hard as her whole body went rigid. Her eyes are open but she's totally unresponsive. Then the clonic phase, usually the whole thing is under two minutes followed by another couple minutes of confusion and inability to communicate. The last TC was 8/1 and her friends said she just dropped from a standing position. She's only let out the "warning yelp" (don't know what else to call it) one time.

She does descibe "losing a few seconds" especially during school that we first thought was spacing out, but now suspect absences.

This hallucination is something new she says--this has been the first potential epilepsy type symptom that she's been aware of and could tell me about that I know of, and so far has just been the one time. About half the time, she'll remember an aura just before a TC like weird taste or feeling cold, etc. I never noticed her eyes like that before either, but I wasn't looking either, you know. She has no recollection of anything happening during the night or feeling any symptoms, just profoundly tired the next day and the tiredness lasts longer than with the times she's had TCs before.

 

[Endless]

Is it possible to go to another doctor for a second opinion? If you can find a seizure specialist, not a general neurologist, that's even better. There's been plenty of chat in here about how doctors, even some neurologists, don't know what they are talking about when it comes to epilepsy and seizures. I think your doctor could be wrong.

It's important to correctly diagnose what kind of seizures you are having because different medication is prescribed for different kinds of seizures.

Here's a link to a website where you can find a regional epilepsy center in your area. They tend to have very good epi's: http://www.naec-epilepsy.org/find.htm

 

[Junebug]

Reading this it really concerns me. Back in April I too had TC that made me unresponsive as you have described and was having hallucinations for a week. I was admitted to the hospital for 3 days because a CT was done at the hospital and it showed that my brain was swollen.
My dr. (an excellent Epileptoligist,) made the diagosis of Status Epilepticus, (the point of being in constant seizures or seizures one after another for more than 30 min.) and drug toxicity, (my dr had recently "upped" my Zonisamide dosage from 200 to 400 mg). I think I only remember about 1 hr (if that) of the 3 days I was in the hospital. I saw the pictures on the wall moving as if they were a TV screen, (I asked the nurses to cover the picture with a sheet,) the TV seemed to be on but it was off the whole time, and I thought my husband was controlling 4 different universes. I started speaking nonsense and told my sister I had been "bottled up in a cell phone for 25 yrs" It was really scary for me and my family and I am still trying to remember everything I forgot.

 

[Cint]

Hi Karen,

I suffer from CP seizures that may/may not generalize into TCs. I also have experienced hallucinations several times right before going into the TC. One time I was taking a walk and I thought I heard someone yelling my name and I turned around and started walking away, but no one was there. Right before the seizure I remember a woman walking up to me and asking if I was okay. The next thing I remember, I was lying on the ground face down with a group of people hovering over me, deciding whether to call 911 or not. And there have been a few other times where I hear a faint "voice" right before the TC.
Sometimes while reading, half the page disappears momentarily and my epileptologist thinks it may be an aura for me.

 

[karenb68]

Thank you all. I looked at the epilepsy center listings, and while Chicago is about 4 hrs plus away, I will do whatever it takes. I have had, on occasion, those little spells for a few seconds when I feel sort of detached (almost high) but I can not imagine how fearful this must be for a child or adult to know they are hallucinating. I'm about to become one of the pain in the --- moms who researches everything, LOL.

I'm a little annoyed that NOT ONE doctor mentioned SUDEP to me, I found out about it here. With her continuing (so far) to have seizures after starting AEDs, now having nighttime ones...and I discovered today that the electrical issue with her heart is also associated with higher risk of SUDEP. Her neuro didn't seem concerned about the uneven pupils, really. My only medical training was as a basic EMT many years ago, but I swear that was a sign of brain injury? On the one hand I tend to let doctors intimidate me, when I see their eyes roll when I mention something I saw online and they remind me of the experience they have in their respective fields. But then today, after reading a case study, written by doctors from a university study, about the association with her particular heart issue I wrote one of the doctor/authors. And, lo and behold, this man wrote me back within a couple of hours--on a holiday! And he said I was correct to be concerned about the correlation and that I should refer her cardiologist to the case report and others like it. And that just gives me enough confidence to keep pushing for her health and safety, and enough confidence to say bite me the next time someone gets condescending to me when it comes to my kid, LOL.

 

[RobinN]

For my daughter the change in seizure activity was caused by the medication.

Rebecca's seizures began at the age of 14. I have the last two years of her treatment written in Rebecca's story in my signature. She is not medicated at this time and her seizures are improving dramatically after making nutritional changes.

 

[karenb68]

I hate this, but I think it's time for a new doctor. the one we've been seeing is one of only two pediatric neuros within 90 minutes of here. I called again Thursday morning because my daughter missed about half the week of school--had to pick her up one day because everything was like "looking through water". She slept the next day for 17 hours. Dizziness, nausea, joint pain, feeling of "unreality" and now has a sensitive rash that I think must be some sort of allergy/sensitivity reaction. I was also concerned because they insisted on increasing her Trileptal from 900mg daily to 1200mg, even though her lab results this week indicated she was already in range at after 18 days on the 900 dose.

Anyway, I called Thursday morning, and as of noon today (Saturday) they still hadn't returned my call, so I called again and got the patient advisory nurse. She called the doctor, then called me back to tell me that "The doctor does not think any of these symptoms are related to the medication". ??? But no comment on what they are from if not from the meds. Yes I'm one of the PITA patients that reads up on things, and I know SJS is very very rare but why blow things off if they havent' even seen the rash? The nurse advised taking her next week to a gyno to have it looked at--this is a child who is not active. Am I nuts here or what? Well, maybe, but she is uncomfortable and obviously something is wrong. This is actually the second time that the nursing staff did not return my call after a few days, and we've only been seeing her since June. Very frustrating!

 

[RobinN]

I am a rebel when it comes to situations like this. When I am not getting the care that I believe is in my childs best interest I make personal judgement calls. Take this for what it is worth. I did back off of a medication that was obviously causing my child more harm than good.

From my daughters experience, it is MY OPINION that your doctor is wrong. Just because they wear white coats does not prove that they are knowledgeable in all areas.
You have to decide if the cure is better or worse than the symptoms.

 

[lindinig]

Yes, I think it is time to switch doctors. My son's first neurologist returned all of my calls about 8 hours after I left a message for him and I found that completely unacceptable. I couldn't imagine waiting DAYS for a return call, when my little boy is suffering with either seizures of the wrong medication.

I'm so glad I switched doctors. I have e-mail access to my son's new neurologist. He has replied to my e-mails sometimes within an hour. He has replied to my e-mails while he's been on vacation, on Saturday, after 6 p.m. It was totally amazing! If it wasn't for him, I'm sure we'd still be trying medications, experimenting with different dosages, toxicity issues, etc. I'm one of those moms who researches everything to death. So far, he has never been intimidated by the amount of research I do on my son's behalf. I haven't sent him an e-mail in over 13 weeks. If my son makes it to the 6 month mark, I'll send him an e-mail just to update him on my son's new-found seizure control.

 

[Endless]

Karen,

If you call a dermatologist and say "Trileptal" and "Rash" in the same sentance they will get you in quickly. SJS is nothing to fool around with. I said "Lamictal" and "Rash" and they saw me same day. If you can't get in QUICK have your primary care physician make the call. The rash is probably nothing, but it needs to be seen.

P.S. The online pictures of a drug reaction rash looked nothing like my drug reaction rash. So you need to have a doc look at it.

 

[jmemeier]

I think you are right in getting a second opinion. My 11 year old daughter also has both T/C and Absence seizures, and while her experience is different than your daughters, she did go through a period of being excessively tired all the time. We couldn't even drive to the grocery store 4 miles away without her falling asleep! She had some other side effects as well that I felt were med related even though they were not listed as known side effects and her neurologist had not previously seen them associated with that med. He did, however, listen to my concerns and adjusted her meds and we saw immediate results. No more sleeping all day and no more of the other side effects! That experience reinforced just how important my role in her medical care really is.

You might not be the doctor, but you are the mother and that makes you very qualified to question when you know something isn't right.