My little one started out having febrile seizures several weeks ago. He's twop months short of turning three. He had two within the same 24-hour period. Both of those lasted about 10 minutes. He was clenching and unclenching his hands, his legs were shaking, his body was shaking. After first one, he was awake and going within a few minutes. Second one kept him out for a long time.
Later that week, he had what appeared to be another seizure lasting about 2-3 minutes. He was sitting upright and it looked to me like he was jerking----arms, legs, would occur on one side, come to the other. He woke up a short time later apparently okay.
Next week, he had what looked to me to be a seizure, but he had meds by this point----diastat gel prescribed by his neurologist. That one went about 7 minutes and I used the diastat. He had a short one a couple of days later, similar kinds of movements.
He had an EEG a few days later and that was normal. However, he was put on Trileptal and we are up to his regular dose.
This week he had what I can only call "spells" after seeing his neurologist. I've done tons of reading so I can describe these well and they look like might be myoclonus at least some of the times to me. His hands will open and close, one leg will jerk, then other leg will jerk, goes in waves. He had what looked like a shaking seizure Thursday morning. I saw him doing the shaking, opening/closing, jerk in bed, but then his body was shaking----his head shook, body arched a little.
Neuro wants to do a 24-hr continuous video EEG in hospital to see if we can catch this on tape, but I am buying a camcorder per his suggestion to see if we can figure out whether he's having true seizures or something like sleep myoclonus. If we catch on video, we don't have to pay for an expensive hospital test.
The one thing that typically happens is he will come and find me and lay down in my lap, then fall "asleep," and that's when these things will often start up.
Does this sound familiar to anyone? I've been looking for info, but it's terribly hard to find information without digging through everything else too.
Hi Elaine....I am sorry I can't help you with your questions, but I just wanted to let you know you are not alone. I can understand your frustration and concern...I have been in your spot! My daughter is 7 yrs now, and was 4 when diagnosed with complex/partials. We just had a 24 hour EEG done a few weeks ago and are awaiting results. We didn't do the in-hospital one, but she had an ambulatory monitor on so she could continue to do her normal routine.
We tried and are still trying to get one on tape...hers don't last long enough to grab the camera! I do know that is a good way for the doctors to truly understand what you are describing. Because from listening to other people...seizures manifest in hundreds of different ways! So good luck on getting the video!! I hope that will help the doctor in finding the problem.
Did your son have the Sleep deprived EEG? Tiffani had one of those and it came back abnormal. Sometimes they will come back normal though....he must have been having a good day on that particular day! lol Of all the luck...ehheheheheheheh
Chris had the sleep-deprived EEG and it came back normal. He got very clumsy earlier in the summer and started falling and bumping his head. I've wondered if that is what triggered the seizures, but maybe it was a sign that he had been having seizures and it started getting worse?
My older son said he has seen Chris shake in bed while asleep, so I don't know what to think. If it is epilepsy, then I want to know sooner rather than later. However, a normal EEG is good. I hope we can figure all this out.
I've got 2 youngens' with Epilepsy... and we've pretty much been there done that with most everything.
The video idea is wonderful. Like Lindy says they can be hard to catch sometimes. What we did was put it up on the bar near Jake's play area and just let it run. Pretty easy at the time since he wasn't mobile. If we didn't catch anything we rewound and did it again the next day.
Jake's (age 2 seizing since 10 mths) EEGs have all been abnormal. We are going back on Friday for another 24 hour VEEG and MRI. But, Jenny's (age 15 seizing since around 1 yr - but we didn't know for sure until May) have always been normal. I know go figure right!
Elaine, I was thinking, maybe he's having an aura (- knows/feels that ones is on the way) and that's why he's coming to you. You're a safe place for him. I hope that if Jake can tell that he would try and find one of us...
If I were a gambling person, I would bet that your son was having seizures before he started falling, that the clumsiness is a result not a cause. Please don't feel bad about it. Some of this stuff is so subtle it's hard to tell, look at me - we didn't get Jenny answers for years, we were treating for ADD not seizures. If we had never had Jake - she might have went her whole life trying to figure it out.
Keep us posted on what you find out... Sorry I couldn't be of more help! Know that you aren't the only parent in search of answers for their child, and that the fear and uncertainties are real and we all experience it to some degree.
Thank you Lisa. My H has never seen one of these spells. It happened again in the car today. This time I wrote it all down so I could describe it better. Chris did not want to wake up at first---was pretty groggy. He was fine after that. It is frustrating because I don't know why. No one in our families has a seizure disorder. H doesn't necessarily believe me.
I'm glad to know I'm not alone with this stuff. It's hard to trust your instincts if the medical tests they use to measure some things come back normal. How does your daughter feel about finally being diagnosed? Has it been a relief for her? I know I need to trust myself with this.
Yesterday he slept hours and decided to get up at 10:30 to finally eat dinner. When he did go back to sleep, he wasn't shaking, so I don't think it's normal.
Anyway.....I am determined and that's a good thing. We will find out what's going on.
You are doing the right things for Chris. He needs you more right now then anything else. It is so hard to be strong some times when all you want is to have them better!!!
Get a dayrunner, calendar, journal something to collect information in. We use a dayrunner that shows one week at a time and we insert blank pages behind each week if we need them. Most of our intries look something like this:
9:00A ~ 30 sec. mild no convulsions, confussed for 30 or 40 min - no nap
10:56A ~ 1.45 min. rolled eyes up & right - for 30 sec. convulsions - mostly tonic/mild clonic - slept 1.5 hours, didn't want lunch, seems unsteady and grumpy
9:35P ~ 2.35 min. rolled eyes - convulsions heavy whole time - did not regain, went straight to sleep did not take bottle.
Jake's got so bad for awhile that we put the notes on the blank pages as would maybe have 8 to 10 in a single day. BTW tonic/clonic is another name for grand mal... Tonic is the stiffening phase and clonic is the jerking phase - just in case you hadn't ran across that one yet.
I need to run... not done with this - but I have an hours commute to get home an if I don't get going...
I saw some posts from earlier in the year where you were talking about the link between migraines and epilepsy and ADHD. I'm glad I was looking and found that post because maybe that helps in some ways.
My daughter who will be 6 in March has always been on the go. This past summer, she started acting impulsively and dangerously---more than usual. Some of what I have seen on SI fits her. She recently started having what seems like migraine headaches as well. Something my oldest son has had since he was at least 4.
Anyway, their father has bad migraine headaches. I do and my mother as well----although mine do not incompacitate (sp?) me the way hers do. One of my brothers gets headaches in the same way.
No one that I'm aware of in either of our families has any kind of seizure disorder although one of my mother's brothers was considered mentally retarded and her other brother is LD----gets along fine, but had trouble in school. Chris also seems to have muscle weakness going along with this, so we are following that as well.
I don't know what to think. I think I probablyu should have paged the neuro on call today, but I don't know. I guess I will. I just want to believe this is a problem! Grrrrrrrrrr!
Video is a great way to try and catch these. SOmetimes it does take an EEG linking the movement to what is going on to make sure if it is seizure myoclonic jerks or muscle myoclonus. My son has seizures, has had normal and abnormal EEGs (such fun when he has seizures, but just not during the EEG!). He also has lots of jerking that we know now is the muscle type and not seizure. He has complex partial, simple partial and nocturnal seizures. The jerking will increase if he is over tired or sick.
Hang in there. Hope it gets figured out...
mom of 2 teens who have battled seiuzres.
Since I posted yesterday, he had another seizure late in the afternoon. I had called the neuro on call after the two and was told to keep on. This was the third in less than 36 hours.
We ended up at the ER last night. After some bloodwork, they have decided to up his trileptal to 5mls 2X/day. I'm writing down what happens-----starts in a hand and proceeds from there. It is a progression of muscle groups.
Chris has told me that his head hurts if I ask and he shows me where. Also says no when he means no. He had a normal CT scan last month. Might the headaches be of any significance?
I don't know where this has come from. I think that's what is so frustrating. And now to see him so out of it and not himself makes me want to cry.
Hi - my daughter has lots of seizures brought on when she is sleeping. For a few years that was not the case, but it is so again. The pattern is constantly changing. I feel so helpless that she cannot get enough sleep. Its horrible. Good for you for keeping track of it all. Advocacy will help your child big time.....all the best....Paula
I am starting to accept that this may not be so easy or isolated incidents that will amount to nothing. My little guy has been sick and he seems to be getting just a little worse every day rather than better. I hope he proves me wrong tomorrow when I take him back to the doctor for a check on the other stuff going on. His fever is back to fluctuating up and down somewhat after a two-day break.
I did call today and found out that Chris will be going for the VEEG (they call it long-term monitoring) in a couple of weeks. I thought it would be 24 hours, but his doctor has ordered this for two nights.
Is there a good face for extremely frustrated? How many have tried really hard to hold it together, but just get to a point where you can't anymore? I'm worried about neglecting my older children in this whole process. I am so scared because I don't know what's going on. Maybe this will all pass soon and be a bygone. I hope so!